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Marc - 07/20/99 19:06:13
My Email:
Mzlotogura@aol.com
Heart child's name: Ethan Hunter Barger
Heart child's defect?: HLHS
Child's surgeries?: Norwood
City/State/Country: Knoxville, TN USA
Comments:
Ethan is my grandson. He was born on 7-8-99 and had his first surgery on 7-13-99 at Vanderbilt Hospital in Nashville, TN. He is doing very well at this time. We didn't know he had a problem until 24 hours after he was born. The doctors and nurses we have encountered in the past ten days have been wonderful.

 

Mike and Steph Davis - 07/17/99 15:57:23
My Email:
lilfighter@netscape.net
Heart child's name: Anthony Michael Davis
Heart child's defect?: HLHS
Child's surgeries?: unborn
City/State/Country: Lorain, OH USA
Comments:
First time experience, could use encouraging comments from other families in same situation. Due date is Sept.28, 1999.

 

Tami Garrison - 07/14/99 21:26:26
My Email:
tamigarrison@yahoo.com
Heart child's name: Melissa Nichole
Heart child's defect?: HLHS
Child's surgeries?: unborn
City/State/Country: San Jose, Calif.
Comments:
I am 30 weeks pregnant and through an ultrasound, my baby girl was diagnosed with Hypoplastic Left Heart Syndrome. She is due Sept. 18th. We are now in the process of meeting the doctors who will be in charge of the care at the hospital where the surgeries will take place. It has been a rough road for us. Your web page was e-mailed to me by another mother whose child has HLHS. I have also gotten a lot of information and support via the Internet. Thank God for it! Good luck with your little one.

 

Amber Hosier - 07/13/99 19:07:01
My Email:
hosieramber @yahoo.com
Heart child's name: Christopher Riley
Heart child's defect?: Left Hypoplastic Heart
Child's surgeries?: One..Infant Died
City/State/Country: Oakland, California
Comments:
I am a NICU Army nurse who is currently stationed at Ft. Bragg, NC. My older sister, Michele, had an infant born with this cardiac disorder. Baby Christopher died 6 days after he was born. He had the first surgery of the three, and his lungs collapsed. My older sister had no idea that he was going to be born with this disorder. I found your web page while looking up info on this disorder. I am going to give an inservice on this disorder, so I was looking up info. I am glad your little boy has made it. Stay strong and don't give up faith! He is God's little miracle! LT Amber Hosier

 

Michelle Sullivan - 07/12/99 11:52:38
My Email:
garland@hunterlink.net.au
Heart child's name: Due 16 September 1999
Heart child's defect?: HLHS
Child's surgeries?: Looking????
City/State/Country: Australia
Comments:
2 weeks ago my child was diagnosed with HLHS. The statistics in Australia are much lower than anywhere else in the world being a 15% survival rate. Please help me with hospitals, price of operation, accomodation rent details just anything to give my child a higher survival rate. God bless.

 

PJ Heath - 07/09/99 04:09:01
My Email:
wilheath@mindspring.com
Heart child's name: Mary Tensley
Heart child's defect?: HLHS and Group b strep
Child's surgeries?: none
City/State/Country: Macon, Ga. USA
Comments:
You are so blessed to have little Ben. Thank the Lord for His grace. Tensley was born on the 3rd of June '99. She died on the 20th, fathers day. Our first baby. She had group b strep and was delayed the first surgery because of it. She died the day before she was supposed to have it. She was so beautiful. We did not know anything was wrong with her for 10 days. I am thankful to God for those days at home not knowing anything was wrong. Had it not been for the strep that caused her fever, we would have never known about her heart, and she would have died at home. We were totally shocked at all of this and are having a difficult time dealing with it all. We would like any info on this concerning the likelihood of it happening again. Thanks for your story! In Christ- PJ

 

Sue Fisk-Nana - 07/08/99 14:17:28
My Email:
dfisk@tdi.net
Heart child's name: Alex 3-2-98
Heart child's defect?: scar tissue/left ventricle
Child's surgeries?: cath.-12/98
City/State/Country: Toledo,Oh
Comments:
Your page is such beautiful work! You have done a service to so many people, as shown on your guest book. Your son looks very healthy and beautiful. God Bless you and your family and thank you for your contribution. Drs. say Alex has hlhs, but actually has scar tissue on his left ventricle, possibly from a heart attack in utero. His heart is doing what it needs for him, but may also be over working which will cause it to enlarge. He may eventually need a transplant, but is a very happy and active and brilliant 16-month-old. I hope to find information that may pertain to his situation. Norwood is n/a.

 

Lenore Cameron - 07/06/99 15:20:24
My URL:
http://augustachronicle.com/stories/022599/fea_heart.shtml
My Email:
LENORE1231@aol.com
Heart child's name: Jeffrey
Heart child's defect?: HLHS
Child's surgeries?: Stage I 6/24/96 & Glenn 1/23/97 Fontan-waiting
City/State/Country: Cromwell, CT USA
Comments:
What a healthy little boy you have! Ben looks great. In fact, his twin could be a little boy named Brandon who lives in Massachusetts and also has HLHS! He's one of the little boys who's in the first picture of HOPE (picture of 10 kids) which can be see at http://www.adventureangling.com/chd/hope.htm Brandon is the one on the top row, on the right. He was 18 months old in that picture and he's 3 years old now. What do you think?

 

Dawn Bettencourt - 06/28/99 18:45:46
My Email:
steve.dawn@snet.net
Heart child's name: Nicholas
Heart child's defect?: HLHS
Child's surgeries?: Norwood
City/State/Country: Milford, CT
Comments:
Nicholas is now two 1/2 months old and 12 pounds. I was wondering how he does in the summer months and if he needs the air conditioning. My cardiologist said it isn't necessary except in the extreme humidity but you are living through it, so I wondered our thoughts. Also, did you notice signals that told you Ben was ready for the Glenn? I worry that I won't recognize them. Thanks Dawn

 

Julie Wright - 06/25/99 03:30:20
My URL:
http://DKJulie@aol.com.
My Email:
DKJulie@aol.com.
Heart child's name: Brendan
Heart child's defect?: hlhs
Child's surgeries?: all 3 at chop in philly
City/State/Country: Baltimore, Maryland
Comments:
Glad he's doing so well! My son will be 4 this August 1999. He's doing great! Anything a child his can. His surgeries were at Children's Hosp of Philadelphia by Dr. Thomas Spray. Do you have contact with any families that have had surgeries in Philadelphia? I'd love to hear from you. Julie--mother of Alex 6yrs, Brendan 3yrs and Marina 21mos.

 

Allison D. Dowdy-Taylor (Doni) - 06/24/99 18:02:41
My Email:
taylorad@arspace-emh2.army.mil
Heart child's name: Quelynn B. Dowdy
Heart child's defect?: Aortic Stenosis w/a hypoplasic left heart
Comments:
It was good to find a wed site on this matter and by someone who understands the problem. Most people look at you crazy when you tell them and of course they do not understand. Quelynn is now 10 years old so there is hope for us all. Quelynn had his first surgery when he was 2 1/2 weeks old and I/he has been blessed only one surgery but so many balloon angios to count. He is doing well, he had a cath done 22 Jun 99 and the news was not good, his valves are still the size of a newborn. So now the doctors are discussing the next step, we find out next week who, what, when, where, & how of the next surgery. This cath was the worse one of all, his lungs filled up right after the cath and the doctors still do not know why and he was rushed to ICU. But he s at home and is OK, just tired. I know there is a full future for him and little Ben. Just keep the faith and look for the future and all will be great. I know we were told to take our newborn home and love him for he would be dead in 24 hours and nee less to say we did not listen to the doctor and we have had him 10 years with many more years to go. So sometimes doctors do not know what they are talking about. I wish you many years of enjoyment with Ben and there will be many more. He seems to be a fighter and looks pretty strong. Doni

 

sarah stinebaugh - 06/23/99 17:25:09
Heart child's name: kaitlyn
Heart child's defect?: hplh
Child's surgeries?: norwood
City/State/Country: canyon tx randel
Comments:
Kaitlyn is due for her next surgery and reading about your son has helped. Kaitlyn has the narrowing of the aorta also. My address is 1500 8 th street unit e canyon tx 79015. I'm using a friend computer to find more info. Good Luck! and thank you very much s rah & kaitlyn


Katy Ruehr - 06/22/99 18:29:53
My Email:
kruehr@hotmail.com
Heart child's name: Logan
Heart child's defect?: HLHS
Child's surgeries?: None
City/State/Country: Kent, OH
Comments:
Logan is not my son, he's my nephew. Tomorrow would have been his 2nd birthday, but he only lived 4 days. I can't even imagine how hard this must be for parents, but I know that it's hard for the rest of the family. Logan now has a beautiful, healthy b by brother, Jared, and we are all thrilled beyond belief. But on days like these, it is still hard to believe that he's not here. Sites like yours are so comforting--what a wonderful little boy you have! Thank you for touching my heart.

 

Christy Bjerke - 06/21/99 18:26:48
My Email:
CMBjerke@aol.com
Heart child's name: Brendan
Heart child's defect?: CCHB
Child's surgeries?: None
City/State/Country: Bloomington, MN
Comments:
Incredible site...excellent job!!!

 

Dolly - 06/16/99 05:20:30
My URL:
http://www.geocities.com/HotSprings/Villa/3835
My Email:
dolllee@pressenter.com
Heart child's name: Andrew
Heart child's defect?: Hypertrophic Cardiomyopathy
Child's surgeries?: Septal Myectomy 2/96 Cardioverter-Defibrillator Implant scheduled 6/23/99
City/State/Country: Wisconsin
Comments:
Hi Melissa, Just stopping in to say "Hi". It has been a while since I was here last. I LOVE the birthday page and Benjamin’s pictures! He is soooo cute :) Keep up the GREAT fight Benjamin!! Dolly Lee

 

natalie bonfig - 06/07/99 20:19:11
My Email:
natbonfig@yahoo
Heart child's name: nicole
Heart child's defect?: aortic stenosis
Child's surgeries?: Valvotomy at 6 wks
City/State/Country: maplewood,MN
Comments:
Hi Melissa! I finally got on line! Your web page is great! I hope to see you at a PFH meeting soon. natalie

 

Karen Nobles - 06/07/99 01:27:33
My URL:
http://members.aol.com/scottyn23
My Email:
momEnobles@aol.com
Heart child's name: Scott
Heart child's defect?: Viral Cardiomyopathy
Child's surgeries?: Transplant 1-15-99
City/State/Country: Hesperia Calif.
Comments:
What a beautiful page. My son Scott had a heart transplant 1-15-99. He is doing well. He had a virus attack his heart. He was diagnosed Sept.98 with severe damage and an extremely enlarged heart. Best of health to you all. Karen

 

Dave & connie - 05/23/99 15:42:54
My Email:
dfinley@nvc.net
Comments:
Dear John & Melissa & kids, Hi! Just checking in again! I read the messages every once in a while. I also check for updates. Mom said Ben is doing so well. He's just a little trooper! He is looking so healthy in his pictures I've seen lately. I still haven't seen the picture of all five of the little grandkids. I'm supposed to get a copy, but I haven't seen anyone lately. Anyway, I'm really anxious to see all of you again. I hope it will be soon! Kiss those kids for me! Love, Connie

 

Lori Gherardi - 05/18/99 02:34:09
My Email:
Lori.Gherardi@usa.xerox.com
Heart child's name: Rachel Marie
Heart child's defect?: HLHS
City/State/Country: Children's-Mpls, MN
Comments:
Have finally had the courage to write and thank you for your wonderful pages on Ben. Our daughter, Rachel, was born 4-12-98 and died in the first surgery on 4-14-98. She was full term, no other complications, but her aorta was smaller than ultrasounds showed before and after delivery-so small, that "it" couldn't be done, so she died in surgery-what a shock) We had all the same WONDERFUL doctors: Dr. Singh, Dr. Helseth, Dr. Overman, (and nurse Ginger) so it was such a surprise when I just happened to come across your page, not knowing you were in Mpls. I don't need to tell you how difficult it is to lose a child. You have been through so much! As you have experienced, every day there is still much sadness without Rachel, so I just wanted to send you good thoughts and prayers for little Benjamin. Sincerely, Rachel's Mommy

 

Grandma - 05/15/99 15:44:54
Heart child's name: Benjamin
Heart child's defect?: HLHS
Child's surgeries?: Went home to heaven at age of 10 days
City/State/Country: Texas
Comments:

 

Laurie - 05/11/99 20:34:44
My Email:
lbenko@yahoo.com
Heart child's name: Talia-Rae(06/97-11/98)
Heart child's defect?: Hypoplastic Left Heart
Child's surgeries?: Norwood 1 & 2
City/State/Country: Canada, Calgary
Comments:
I would just like to express my concern for you and your families during such difficult periods for all of you. Unfortunately, my daughters story already has and ending. Please keep on smiling, and don't let the rough times get you down.

 

Angie Spaeth, RN - 04/30/99 03:43:40
My Email:
thespaeths@centuryinter.net
Heart child's defect?: HLHS
Child's surgeries?: Norwood 1/99
City/State/Country: Spooner, WI
Comments:
I work in home care. I currently have a 3-month-old boy on my caseload. I am interested in learning more about HLHS and hearing success stories to pass on to "Mom".

 

Colin Rosendahl - 04/28/99 20:00:25
My Email:
colindrosendahl@hotmai.com
Comments:
We just wanted to drop you line and let you know that we are thinking of your family on this day. Hang in there!

 

Brenda & Cheri - 04/19/99 22:36:15
My Email:
bchoglund@msn.com
Comments:
Hi John & Melissa and family- It was nice to see Ben on Saturday. He is getting so big; it's great to see him looking so healthy. I didn't get a chance to tell you that I think that Ben's web site is terrific! You've done a wonderful job. You are always in our thoughts and prayers, and we hope everything continues to go well. Talk to you later. Love, Brenda & Cheri

 

Connie Martin - 04/17/99 13:30:48
My Email:
Pootieface@aol.com
Heart child's name: Sara Kelly Martin
Heart child's defect?: Aortic Stenosis, Coarctation of the Aorta
Child's surgeries?: 2 before she was 1 yr
City/State/Country: Brooklyn Park, MN, USA
Comments:
Hi Melissa! Glad to hear that Ben is doing better. I hope and pray that this good trend continues for him. Sara is doing well right now. We have a checkup with Dr. Sutton June 30th. But for now things are status quo. She has been having some bloody noses this Winter, but nothing to be concerned about (this is per Pediatrician and Dr. Sutton).

 

Larelle Jackson - 04/15/99 23:31:41
Comments:
I'm only 11 years old but I was surprised to see a baby having heart problems. I 'm glad he's better and I hope you and Benjamin a wonderful day. Also the reason I read this story is because I'm doing research on it so if you give me some information it would help.

 

Karen - 04/14/99 01:07:06
My URL:
http://www.geocities.com/Heartland/Fields/2287
My Email:
kbsongbird@geocities.com
Comments:
Just visited your site as I noticed you also won the Heartland Heart of Gold Award this month along with our site. Decided to see what you were all about. You have a lovely site and I commend you on supporting and educating parents like yourself. That is the main goal of my web site also. My Son, Ryan suffers from asthma, GERD/GER (reflux disease), Eosiniphillic Gastroenteritis and Allergies. He will be one on April 16th. So not only have we both had tough years, but we both have special boys about he same age. Congratulations on winning the award - you deserve it. You have a wonderful site. =) Sincerely, Karen Stay at Home Mom to (Ryan 4/19/98 and Megan 8/19/96)

 

Jody Edwards - 04/13/99 22:42:32
My URL:
http://www.geocities.com/Heartland/Flats/8362
My Email:
ahhhs@geocities.com
City/State/Country: Mesa Arizona
Comments:
God bless you for all you and your dear son, Ben, have had to suffer through. I am amazed at the courage you must have to be able to face such a difficult trial in your life! Thank you for creating such an informative page. It is sure to bless the live of others who suffer HLHS.

 

Jenn Rosendahl - 04/13/99 16:09:16
Comments:
Hi, just wanted to say hi and that the site looks good! Ben looks sssooooo cute in his one-year pictures that you have on the site! Give all the kids a hug and kiss from us and hopefully we will talk soon! Love ya guys! :)

 

Kim Rosendahl - 04/13/99 14:03:43
My Email:
kjrosendahl@st.kate.edu
Comments:
Hello Cusick's, I was touched by Ben's story. You may not remember me but I am Colin's brother. I pray that Ben continues to improve and your family handles the struggles. Take care. Kim

 

Diane Thompson, RN - 04/09/99 17:53:37
My Email:
Thompson@laa.ci.canton.oh.us
City/State/Country: Canton/Ohio/US
Comments:
I work with children with various congenital anomalies and disabilities. I recently was made aware of a mom pregnant with twins in this area with one child dx with HLHS. I was surfing the Net to educate myself and came across Ben's site. You have made such a touching web page for him that is quite a tribute to your experience and how far you have come. You are to be commended for your courage and perseverance. My prayers are with you and your family.

 

Karen Davis - 04/08/99 15:16:50
My Email:
luv2teach1@hotmail.com
Heart child's name: Paige Nicole
Heart child's defect?: HLHS
Child's surgeries?: 9/18/95, 7/9/96, 7/9/97, 3/24/99
City/State/Country: Overland Park, Ks
Comments:
Paige was born on Sept. 7, 1995 and was said to be in good health. Little did we know what was ahead for us. She is a strong willed 3-year-old now that has overcome some serious problems. We needed to insert a pacemaker this March. Paige is an angel, just like all children with any health problem. We are blessed with wonderful doctors, nurses and friends and family. I wish your family well and hope all continues to go well.

 

carrie stokes - 04/07/99 22:06:59
My Email:
pepsi206@yahoo.com
Heart child's name: serena stokes
Heart child's defect?: hlhs
Child's surgeries?: norwood,glenn,fontan
City/State/Country: cleveland/ohio/usa
Comments:
My daughter Serena is five now and will be six in July. She is doing very well. I wish the best for your family

 

Stephanie Seul - 04/07/99 21:01:52
My Email:
stefseul@jps.net
City/State/Country: Pacifica, California
Comments:
I have two beautiful and luckily healthy baby boys. I almost lost them both in pre term labor and have a sister in-law that has had two stillborns after 28 weeks. No known cause why. I thought she had a tough time with pregnancy's and children, I was wrong. I came to your sight cause I'm on my way to being an echocardiogram tech and I'd like to work at Childrens hospital. I came across your sight for a research paper and I have to tell you, It was the most beautiful sight I had ever seen! I cried and cheer d through the whole thing. God bless your family!

 

jimmy meeks - 04/03/99 03:10:54
My Email:
jmmeeks@erols.com
Heart child's name: Sydney
Heart child's defect?: HLHS
Child's surgeries?: 1st stage Norwood
City/State/Country: N.Y.C
Comments:
My litle girl is coming home tomorrow after having the first stage done at Columbia Pres. in N.Y.C. The surgeon was Dr. Quagaubear. She is doing great. E-Mail me if you can with an update about Ben. We live in Staten Island New York

 

Marcela's Heart Transplant - 04/03/99 00:30:14
My URL:
http://members.tripod.com/Ineaia/mp1.html
My Email:
oineaia@hotmail.com
Heart child's name: Marcela
Heart child's defect?: hydrotrophic cardiomyopathy
Child's surgeries?: Heart Transplant
City/State/Country: Phoenix
Comments:
Thank you for sharing your son's story with us. You have gone through a lot already. My prayers and best wishes. Ineaia

 

Erica Finley - 04/03/99 00:22:54
My Email:
erfinley@gloria.cord.edu
Comments:
Hi John, Melissa and Family, I just got done reading Ben's page. Everything was so touching and I really admire you all for having the strength to go through this ordeal. I think of you guys often and I pray for Ben's continuing health. I can't wait until I get to see all of you again! I hope all continues to go well with your little fighter and the rest of you as well. Take care and God Bless. Love Erica

 

dolores Lemonier - 04/02/99 23:48:09
My Email:
Lemonier1
Heart child's name: Unborn due 5-13-99
Heart child's defect?: hypoplastic L.H. Syndrome
Child's surgeries?: immediately after birth
City/State/Country: New York,, USA
Comments:
Thank you for putting your story on the web. You have no idea how useful it has been to know step by step what might happen. Your story has helped me tremendously. The uncertainty of not know what my baby will go through once he is born makes me very sad and depressed. Your story has given me insight on what to expect. It has also given me hope. I hope Ben is doing great. God Bless him and I pray for his full recovery. Thank you for putting your touching story on the web.

 

Brenda - 04/02/99 22:15:39
My URL:
http://Logan's HLHS Homepage
My Email:
TSAT129918@aol.com
Heart child's name: Logan
Heart child's defect?: HLHS
Child's surgeries?: Norwood, Hemi-Fontan and Fontan
City/State/Country: Michigan
Comments:
Dear Benjamin, thank you for visiting Logan's webpage, you are certainly an adorable little boy. I wish you all the best in the future and good luck with your surgeries. Take care of yourself and be strong. Brenda (Mom to Logan 2 1/2 years old-HLHS)

 

Glenna Anderson - 04/02/99 17:43:49
My Email:
I:gjanders@co.anoka.mn.us
Heart child's name: Jacob (due 6/9/99)
Heart child's defect?: hypoplastic rt ventricle
City/State/Country: Ramsey, MN, USA
Comments:

 

Pete Fister - 04/01/99 17:54:42
My Email:
petefister@juno.com
Heart child's name: Corey
Heart child's defect?: HLHS
Child's surgeries?: Norwood,Fontan, Bi-Directional Glenn
City/State/Country: St. Joseph, MI USA
Comments:
Hello Ben, Congratulations! My name is Pete and my son who has HLHS is Corey. Corey is 5 years old and will be 6 in July. Corey is a very energetic and vibrant 5 year old....afraid of nothing. Corey had is surgeries at the University of Michigan. Best of luck and God Bless to you and your family

 

Cindy Bour - 03/28/99 05:17:26
City/State/Country: Eagan, MN, USA
Comments:
I am a friend of Ben's aunt Jennifer. She has been telling me about Ben's incredible life since before he was even born. I'm glad to hear that things are going well and that he is over a year old now. Go Ben - we are all pulling for you!!!

 

Debbie Rakos - 03/24/99 05:13:44
My Email:
c21debb@aol.com
Heart child's name: Zoe
Heart child's defect?: Hypoplastic Left Heart Syndrome
City/State/Country: Tucson/AZ/USA
Comments:
I am writing on behalf of my 19-year-old niece. She is 27 weeks pregnant and has just been told that her baby Zoe has Hypoplastic Left Heart Syndrome. This is her 1st baby and I am trying to gather as much info as possible for her. Any info is helpful. You can e-mail me at the above address. Thank you in advance and please say a prayer for Zoe and her Mommy and Daddy. Debbie

 

Nicola Schultz - 03/22/99 02:48:35
My Email:
NSch333@aol.com
Heart child's name: Joseph Schultz
Heart child's defect?: HLHS
Child's surgeries?: Norwood, Glenn
City/State/Country: Orlando, FL US
Comments:
Thank you so much for taking the time to do this--I think if more people who are facing this type of situation could read about it first, it would help them realize what they are going to face and things won't seem so out of the ordinary if they have something like this to relate to--great job!

 

Leslie Schultea - 03/15/99 03:40:08
My Email:
schul@flash.net
Heart child's name: Grace
Heart child's defect?: HLHS and other heart abnormalities
Child's surgeries?: Still born on 11-20-98
City/State/Country: Houston, Texas
Comments:

 

Dave and Connie - 03/14/99 17:49:11
My Email:
dfinley@nvc.net
Comments:
Dear John, Melissa and kids, Just checking in again. Wish I could have been there last week for Ben's first birthday party. I heard how fun it was. Glad to hear he's been doing well! Hope we get to see you soon. Love, Connie

 

Michelle - 03/10/99 04:46:59
My URL:
http://www.freeyellow.com/members6/bbrown70/page3.html
My Email:
bbrown@sonetcom.com
Heart child's name: Pierce Brown
Heart child's defect?: HLHS
Child's surgeries?: Norwood, Hemi-Fontan, Fontan scheduled for 4-28-99
City/State/Country: Elgin,OK
Comments:
This is very nice. My son Pierce has HLHS and will have the Fontan on April 28,1999. These Children have been through so much and are such great fighters. My prayers are with you. I hope all goes well with Benjamin. God Bless.

 

Diane Minenna - 03/09/99 20:45:50
My Email:
Min702@aol.com
Heart child's name: Matthew
Heart child's defect?: HLH
Child's surgeries?: n/a
City/State/Country: New York
Comments:
Our son, Matthew, was born 4/23/96 and passed away on 4/26/96 from HLH (among other ailments). Your web site is an absolute wonderful gift to parents of HLHS children! God bless you all and here's wishing you a fantastic New Year with your beautiful son!

 

Colin & Jenn Rosendahl - 03/09/99 19:14:36
My Email:
colindrosendahl@hotmail.com
City/State/Country: Sugar Hill, GA
Comments:
We just wanted to drop you a line to let you know that we are thinking of both Ben and the rest of your family on Ben's big day. We are so happy for you and are amazed everyday how you stay so strong in the face of all the adversity that has come your way. Also, tell Ben we are proud of how far he has come and look forward to all the joy he will bring as he grows and matures into a big boy. Love, Colin & Jenn

 

Lori Berry - 03/08/99 12:32:30
My Email:
berry4@together.net
Heart child's name: baby Cunning
City/State/Country: St. Joseph MO
Comments:

 

Lori Shafer - 03/06/99 16:39:59
My Email:
lshafer@badlands.nodak.edu
City/State/Country: Grand Forks, ND USA
Comments:
Dear John & Melissa and kids, I was just reading your page. I try to check it every so often for updates to see how things are going. You have done such a wonderful job with both of your pages, every time I read them it brings a lump to my throat. I hope things are going well. Brenda tells me you are having Benjamin's birthday party on Sunday, that's great! Take care. You’re in our thoughts and prayers. Say hi to everyone from us. Love, Vern, Lori, Jared, Samantha, and Christina

 

Susan Myers - 03/02/99 22:23:21
My Email:
ssmyers@mail.csrlink.net
Heart child's name: Alexander
Heart child's defect?: HLHS
Child's surgeries?: Norwood 12-18-98
City/State/Country: Williamsport, PA USA
Comments:
Love your page Ben.

 

Jennifer & Patrick LaPergola - 03/02/99 16:32:04
My Email:
lapergj @ towers.com
Heart child's name: Kyle Brendan
Heart child's defect?: HLHS with severe tricuspid regurgitation
Child's surgeries?: Norwood3/4/98, Hemi 6/29/98, Hemi takedown 2/1/99
City/State/Country: Phila., PA
Comments:
Kyle was born on March 1, 1998 and you had sent well wishes before his second surgery. Kyle passed away on February 7, 1999. He had one in a million complications. Best of luck and all our prayers are with Ben.

 

Pariss Hardy - 03/01/99 22:41:24
My Email:
p.f.hardy@attcanada.net
Heart child's name: Pariss
Heart child's defect?: atrial septial defect
Child's surgeries?: Ottawa Heart Institute
City/State/Country: Canada
Comments:
I too had a congenital heart disorder, but it was not discovered until I was 21 years old. Your touching story about Ben overwhelmed me and left me reduced to tears! But in a good way! A pacemaker regulates my heart block and I am very well and gifted with good health, all and all. My regards to Ben! Hi Ben! How are you? Your journey, though painful in the flesh, has given you in return a gift of wisdom beyond your years. Through self esteem and capturing the wisdom of this "set-back", may it bring to you a catalyst, a springboard that will allow you gift to be fulfilled beyond your wildest dreams, hopefully not only in the normal sensory perception we now have that dictates our reality, but beyond that to the true meaning of life that evolves in our emotion i.q. (intuition -- our spirit, our soul). I am truly a kindred spirit and will think about your journey and hope to "see" and "hear" more about you on geocities, and the wonderful webpages your Mommy and Daddy have developed with all of the love and painful frustration and helplessness of what on y parents as rare and spiritual as they can only go through. A paradox, isn't it?

 

reano - 03/01/99 14:26:27
My Email:
lilpun1@yahoo.com
Comments:
I really enjoyed reading about Ben. He is a very special child indeed. The story made me realize al the hard times parents go through in the process of bringing a child into the world. I want to become pediatric cardiologist so that is how I came across our page. I would really appreciate it if you would give me the phone number and address of doctor Singh the you doctor so I may find out some more information. I would really appreciate that. Once again I really enjoyed reading the story and viewing the pictures. I wish nothing but the best for your whole family.

 

Jennifer Rosendahl - 03/01/99 12:30:21
Comments:
It was great to see all of you this past weekend. Keep us posted on how everything is going.

 

Lisa Abbott - 03/01/99 04:46:44
My Email:
labbott2@uswest.net
Heart child's name: Brandon
Heart child's defect?: HLHS
Child's surgeries?: Norwood, Glenn
City/State/Country: Des Moines, IA
Comments:
Great web pages. I really enjoyed reading about Ben and seeing his pictures. He looks great.

 

Dawn Finley - 02/25/99 20:02:46
My Email:
dfinley@prairie.nodak.edu
City/State/Country: Fargo, ND
Comments:
This is a wonderful page! It made me very emotional to read the real time reactions to what was going on.

 

leslie Tingler - 02/24/99 15:26:21
My Email:
ltingler@yahoo.com
Comments:
Your web site was very helpful in my research project. I hope everything continues to go well!

 

Aimee Winter - 02/21/99 23:51:22
My Email:
SkyeMadison@webtv.net
Heart child's name: Skylar Madison Michael
Heart child's defect?: HLHS
Child's surgeries?: #'s 1 & 2
City/State/Country: Avon, MN. USA
Comments:
I just want to add to my previous entry that any other parents, relatives, etc. can also E-mail me. We are new to this site and would like to meet as many people possible who have, here or in heaven, a child with HLHS. I hope to here from Ben's Mommy and others soon and will answer all letters received.

 

Aimee Winter - 02/21/99 20:52:14
My Email:
SkyeMadison@webtv.net
Heart child's name: Skylar Madison Michael
Heart child's defect?: HLHS
Child's surgeries?: Norwood # 1&2
City/State/Country: Avon, MN. USA
Comments:
Our son Skye was diagnosed with HLHS through ultrasound when I was seven mos. pregnant. Like Ben, Skye's cardiologist is Dr. Amarjit Singh at Minneapolis Childrens. Skye was born via C-section at Abbott on Sept. 25,1996. I can't explain the feelings I held on that day. I wasn't sure if a part of my life was about to begin or end. I could sit here for hours trying to put my feelings I had on that day into words, and I still probably could not begin to explain how I felt being on, what I call "The emotional rollercoaster." But I'm sure all of us parents understand what I mean. I'm sorry to hear about Matthew. He was such a beautiful baby and is probably the most handsome little guy in heaven! I'm sure he is watching over Ben very Closely. Skye had is first surgery at 2 days old, with Dr. Helseth and Dr. Singh. He made it through, though barely. At one point, the nurse came out and told us he wasn't going to make it. Two hours later, we were told that he did make it, but only after losing him three or four times. This is what I mean about the rollercoaster; there are so many ups and downs emotionally. He recovered very slowly from this first surgery, not wanting to wake up from sedation enough to be extubated until almost 3 weeks post op. That as scary. We thought for a bit that he may have some brain damage due to the rough time he had in surgery (not wanting to come off of the heart/lung machine until the fourth try). Anyway, he came home, after nearly a month, on an NJ tube because he wasn't strong enough to eat very well. He only had that for a month. He had his second surgery when he had almost turned four months old. That one went much smoother than the first one. But equally as emotional. Before I forget, Skye's primary nurses are Shirley M., Janet K., and also Peggy. I don't recognize Ben's other two nurses, by name anyway. With his second surgery, he was out of the hospital in two weeks. He was nearly seven months old when he finally hit the 10-pound mark and grew out of newborn diapers, but still wore size 3-month clothes until his first birthday. Was Ben really small for his age? After he turned one, he really began to grow, a lot. Dr. Singh thought his body was finally adjusting to the Glenn and not using up so many calorie to breath anymore. He has been heart healthy since his second surgery, but was hospitalized on 6-8 different occasions (between the ages of eight months to seventeen months old) for chicken pox, a 106 degree temp., rotovirus, croup, and RSV, etc. He has been totally hospital free since Mar. of 1997, almost one year. Knock-on-wood! He is now quite big at 32 lbs, with chubby cheeks and ALOT of energy. We just saw Dr. Singh last Friday and Skye's SATS were at 77-79 but he does have a cold right now too. Hope that's why they are down. He will have his heart cath done in April or May to make sure he is a good candidate for the third surgery. So far, they think he is. They are looking at doing his fontan in late summer or early fall. I'm nowhere near ready to get on " The emotional rollercoaster " again. I'll keep you updated. PLEASE RESPOND Tim & Aimee Winter Austin - 6 Cory - 4 Skye - 2 Keagan - 4 months

 

Kathy Cooper - 02/19/99 13:57:18
My Email:
kc.coast@juno.com
Heart child's name: Jake Ryan [my nephew]
Heart child's defect?: HLHS
Child's surgeries?: the three described
City/State/Country: Boston, MA
Comments:
Isn't it amazing what technology is available to these kids? Jake's parents were offered an abortion at 5 months..... Not an option for them. Our family gives thanks for him every day. He's doing exceptionally well...unfortunately; he has asthma, which complicates things a bit. But cognitively he is perfect. His doctors at Boston Childrens Hospital have described him as "the best of the best". My prayers are with your family and Ben. A special gift...my blood matched Jake's blood type and I have been fortunate to donate blood for him for his three surgeries!

 

GAIL SHERRY - 02/16/99 19:52:25
My Email:
marlton@ibm.net
Heart child's name: Tyler
Heart child's defect?: hlhs
Child's surgeries?: numerous
City/State/Country: Winnipeg, MB Canada
Comments:
Tyler (our grandson) was born March 2, 1997 with hlhs. Today just shy of his second birthday he is a healthy, happy, gorgeous little guy. He is a typical normal 2-year-old. He just recently had his heart cath and everything is a go for the final stage f his surgeries but because he is doing so well, the surgery will most likely be postponed until this fall. We thank God every day for Tyler and pray he will continue to do so well. It is so heartwarming to read the stories of these children who are doing so well with this terrible disease but also gutwrenching for those who haven't made it. Ben is a little cutie

 

David & Connie Finley - 02/14/99 21:10:19
My Email:
dfinley@nvc.net
Comments:
John & Melissa, I just finished reading all of Ben's pages. I kept choking up the whole time I was reading! I knew that you guys had been through hell, but until you see it put into works like that, it doesn't really seem real. You have done just a wonderful job on his pages. I'm going to go and read Matthew's pages right now. I hope we get to s e you guys soon! Kiss those 3 darling kids for me. Love, Dave & Connie

 

Alice Sibigtroth - 02/13/99 02:09:40
My Email:
asib1@aol.com
Heart child's name: Mary Alice
Heart child's defect?: Unbalanced a/v canal &HLHS
Child's surgeries?: stage 1& 1st cath
City/State/Country: Manassas, Virginia
Comments:
Hi Ben's Mom and Dad! I don't know if you remember me, but I had written before. My little Mary Alice is in Children's Hospital in Philadelphia right now and is recovering from her Cath. We had unfortunate news, during her echo before the cath; they found a coarc in her aorta. They did a balloon angioplasty. Thank you again for your web page, I remembered reading about Ben's and it kept me from getting too scared. God bless you!!

 

Patricia - 02/12/99 20:20:09
My Email:
obmheik@hotmail.com
Heart child's name: Karl
Heart child's defect?: HLHS
Child's surgeries?: Norwood, Glenn&CoA
City/State/Country: Finland
Comments:
Good to hear that Ben is doing fine, hopefully the seizures have not returned, I remember Ben’s mummy posting about them on tchin and I was wondering how he is doing now! My son Karl is now 7,5 months and a happy trooper in spite of HLHS.

 

Kathy Beausoleil - 01/29/99 07:03:59
My Email:
kbeausoleil@worldnet.att.net
City/State/Country: Tucson, AZ
Comments:
My nephew Joey was born w/ the same problems as your child. He was born on March 10, 1995. This year he'll be 4 years old. He has had all 3 of the surgeries. The last a modified Fontan on Sept 9, 1997. He is incredibly sweet and very smart. I call h m our angel. His problems weren't diagnosed until about 4 hours after his birth. Now he's doing fantastic. He cardiologist has a picture of him in his office and he calls him his poster child. I pray your Ben continue to be strong and healthy.

 

Lorma J. Wagner - 01/28/99 13:05:13
My Email:
cowgirl@delanet.com
Heart child's name: Ashley R. Smith
Heart child's defect?: HLHS**
Child's surgeries?: see commnets
City/State/Country: Bear, DE 19701
Comments:
** Ashley (who is actually my niece) has had HLHS along with other complications as well. She has had part of her small intestine removed, because she was only a preemie (4 and 1/2 lbs) when she was born. She also has both lungs, but only one functions properly. I could go on and on, but most of all I would like to keep in touch and in contact with you (through this site) as well as through e-mail if you'd like. I would also like your permission to share some of the info that you have put on this site with some of my classmates in college. I am going to write a paper on HLHS, and would like to use your site (

 

melissa peterson - 01/26/99 05:34:28
My Email:
linda@rosenet.net
Heart child's name: Keaton (?)
Heart child's defect?: HLHS
Child's surgeries?: unborn
City/State/Country: roseburg, OR USA
Comments:
Thanks for the journal I think probably it helped most of all knowing that the feelings are normal and the fear is rational. The pictures were so reassuring. You have a beautiful baby.

 

Dawn Morton - 01/25/99 19:39:52
My Email:
dawnmorton@juno.com
City/State/Country: Moorhead, MN,USA
Comments:
Melissa, John, and family-Mom just shared your website with me. Of course she has always kept me up to date through Inga at the Manor. Thanks for sharing your family pictures with us.-DMort

 

Debbie - 01/24/99 09:52:05
My Email:
Free2bDebi@aol.com
Heart child's name: Kevin Francis McCanna
Heart child's defect?: HLHS
Child's surgeries?: None
City/State/Country: Eugene, OR
Comments:
Thank you so very much for sharing your story. I am so glad that there is now hope for HLHS babies. My son Kevin was born with HLHS and would be 13 years old had he lived. At that time there was very little hope for these children. In fact, at that time there had only been 18 heart transplant surgeries for this heart defect in St. Louis and none of the children had survived. I am grateful for the 4 beautiful days that I had my dear Kevin to hold in my arms. He was born at home so the whole family was able to see him and spend some time with him. Even though we only had him for a few short days...he will remain in our hearts and memories for a lifetime. I too praise God for the miracles he gives us...the wonderful doctors with their healing touch...and the endurance to go the extra distance. My prayers are with you for continued health and a joyful life with baby Ben. Deb

 

anne stoodley - 01/23/99 01:12:04
My Email:
aNNE.STOODLEY@NS.SYMPATICO.CA.
Heart child's name: LAURA
Heart child's defect?: HLHS
Child's surgeries?: NORWOOD 022598
City/State/Country: CANADA
Comments:
THESE CHILDREN ARE ANGEL'S.

 

Vicky Stone - 01/18/99 23:46:20
Comments:
I am a physical therapist in Oklahoma who works in a pediatric specialty hospital. We recently admitted a child with HLHS and as I was doing research on the internet, I ran across your homepage. It is wonderful! What a miracle-God is awesome

 

RANA SAKR - 01/17/99 15:25:20
My Email:
Theguys@naseej.com.sa
Comments:
HOPE BENN WILL DO FINE AND ENJOY HIS LIFE WITH HIS LOVELY FAMILY AND I AM PRAYING FOR HIM AT THE END OF OUR HOLY MONTH OF RAMADAN SO GREAT ALLAH MA GIVE HIM SWIFT COMPLETE RECOVERY I'LL BE TELLING BENN'S PARENT STORRY TO MY STUDENTS AS A GOOD EXAMPLE OF GOOD PARENTS AND GREAT TRUST IN GOD

 

Denise K - 01/13/99 16:04:12
My Email:
JD8707@aol.com
Heart child's name: Benjamin
Heart child's defect?: HLHS
Child's surgeries?: None
City/State/Country: St. Cloud, MN
Comments:
We had a child born with HLHS in Nov'97. I have been following your story ever since last Spring. I wish Benjamin all the best. May all of your family stay strong (most importantly Benjamin) as you are challenged to care for his serious heart defect.

 

Rita Pardee - 01/09/99 16:31:17
My Email:
rfparde@banet.net
Heart child's name: Jacob
Heart child's defect?: HLHS
Child's surgeries?: Fontain (3.6.98), Glenn Shunt (11.2.98)
City/State/Country: Peekskill, NY USA
Comments:
I know Matthew was looking down and helping his baby brother Ben survive this ordeal. We were all blessed to have little angles in our lives. You are incredible people to have gone through these experiences. May God bless your family and all our miracle babies. Rita Pardee, mommy to Jacob (HLHS)

 

Judy Foley - 01/08/99 01:16:09
My Email:
cjfoley@juno,com
Comments:
Gods Blessing to you all...what a remarkable journey for you and your family... I received your web site address from Renee Bobick.... I am so glad that I was allowed to read your story.... You are in my prayers.

 

Gene and Arlene - 01/05/99 23:14:50
My Email:
gmorton@brittonsd.com
City/State/Country: Britton,S.D.
Comments:
Hi, I visited with your mother yesterday, she gave me the address to your site. What a beautiful message you have for others to read and see. God love and Bless you all. Arlene

 

kelly maynard - 01/01/99 00:21:43
My URL:
http://bellsouth.com.net
My Email:
kzm@bellsouth.net
Heart child's name: kyle maynard
Heart child's defect?: hypoplastic left heart
Child's surgeries?: 1st 3/27/98-2nd 9/15/98
City/State/Country: panama city,beach,Florida
Comments:
I wish I had a story like that to read when my son was diagnosed with his heart problem, the only stories I got were, well you know. They are God’s little miracles.

 

Andrea Guerriere - 12/30/98 22:32:31
My Email:
Guerriere1@AOL.com
Heart child's name: Due 3/13/99
Heart child's defect?: HLHS
City/State/Country: N. Massapequa, NY
Comments:
Thank you for the most realistic and detailed information on Hypoplastic Left Heart Syndrome. Ben's pages are great and he is a beautiful boy. I laughed and smiled and cried a lot! I had no idea what to expect for my son to be born in March 1999 until read about Ben. Hopefully, the pictures of Ben have prepared me a little when my son is born. Also, I hope I have the same strength and courage you have. God bless you and your family, especially Ben!

 

Randy Burke - 12/19/98 11:03:23
My Email:
burj@chevron.com
Heart child's name: Nicholas
Heart child's defect?: HLHS
Child's surgeries?: 3rd surgery completed on 4/13/98
City/State/Country: Humble, Texas
Comments:
My grandson Nicholas was diagnosed with HLHS within 24 hours of his birth (8-4-95). We had very little time to make the complex decisions that had to be made and I felt like we were the only family in the world to ever face this. Your website will be a great comfort to the families that face these decisions and the pictures of Ben will speak volumes about the possibilities for HLHS newborns. Nicholas is now 3 years old and he's no different than any normal little boy, except he's smarter and better looking. Like everyone else, I'll look forward to reading the updates on Ben and your family. Good luck!

 

Trish Rains - 12/17/98 01:26:58
My Email:
rrains@flash.net
City/State/Country: Forney, TX
Comments:
You mentioned that you had three sonograms. Was your doctor looking specifically for a cardiac problem? Were these 2nd stage sonograms looking for specific problems or regular sonograms. I'm sorry for asking for such imposing questions, but it would he p me to know. Thank you. Trish

 

Gayle Barfield - 12/10/98 14:10:15
My Email:
Kanga206@aol.com
Heart child's name: Hunter Chase Barfield
Heart child's defect?: HLHS
Child's surgeries?: Norwood, and Hemi-Fontan
City/State/Country: Greenville, North Carolina
Comments:
Your page is excellent! It brought back so many memories of Hunter's battle with HLHS! Your little Ben is just beautiful, I pray that he continues to do well! God be with you, and your family. Lots of HLHS love, Gayle

 

 

 


Leah Netten - 12/08/98 00:27:06
My Email:
lnetten@wild-bird.com
Comments:
Hey, Jenn told me about your web page in her Xmas card and I just thought that I would say how happy I am that Ben is doing well! By the way, I'm Jenn's friend from American Express.

 

Bill Bornhorst - 12/06/98 00:27:40
My Email:
loramie@aol.com
Heart child's defect?: HLHS
Child's surgeries?: none yet
Comments:

 

Steve Watkins - 12/03/98 14:31:25
My Email:
steve.watkins@orionfoodsys.com
Comments:
Melissa, talked to dad last night on his birthday. Sounds like Ben had some serious problems after you and I had been on e-mail. I hope things are getting better, Dad didn't share much info, but sounded pretty down. It sounds like you will probably be staying close to home over Xmas, was wondering if we stopped through for one day, if you might have us. We could get a room across 10 where we stayed for the wedding to make it more convenient. We planned on going back to Britton that Thur night and thought, if things are OK, we'd stop through Mpls on our way home. Please let me know how Ben is doing when you feel up to it. We'll keep him and the rest of your family in our prayers.

 

Uncle Steve - 11/29/98 21:46:18
My Email:
steve.watkins@orionfoodsys.com
Comments:
Just stopped in to say hi! Hope Thanksgiving went well. I hadn't been into the home page for quite a while. Copied a couple of the photos over to show the kids when they wake up from their nap. See ya at Christmas!

 


Pollie Powers - 11/21/98 07:47:49
My Email:
lpowers@firstdial.com
City/State/Country: Buckley, Wa. U.S.A
Comments:
I have enjoyed reading Ben's Guest book. Thank you for sharing your stories of your precious sons! I always want to learn from people like you...you don't take life for granted. You know what the important things are in life, and I appreciate you taking time to share your pain and joy with so many. I know that the Lord will bless you for being a source of hope and encouragement to so many! God bless your beautiful family, and I pray the very best for sweet little Ben.

 

Scott and Tracy Willman - 11/21/98 01:55:56
My Email:
spike@delanet.com
Heart child's name: awaiting birth
Heart child's defect?: HLHS
City/State/Country: Newark/De/USA
Comments:
We first discovered, via ultrasound in Aug, our baby’s condition. We discovered your site then and were saddened and elated at the same. We are in the best of places in Delaware due to Dr. Norwood being in our backyard, and have had a very good meeting regarding the surgery with him. Ben's story has given us a great source for what to expect, and we can not say enough as to how thankful we are to be able to learn from Ben's experience. We would greatly appreciate the opportunity to correspond with anyone ho has or is dealing with this heart condition.

 

Camille Escueta Huang - 11/20/98 05:07:21
My URL:
http://www.tripod.com/bhcejoshua
My Email:
cehuang@aol.com
Heart child's name: Joshua William
Heart child's defect?: HLHS
Child's surgeries?: Norwood
City/State/Country: San Jose, CA
Comments:
I love your homepage! Ben is adorable. What a beautiful angel. I am sure our sons are happy in heaven and playing with each other. I know deep in my heart that they love us and pray for us to be strong and happy. I am touched by your sharing in your web page. I hope to finish Josh's web page too so I can reach out to other parents with heart children like us. Take care always.

 

Lenore M. Cameron - 11/19/98 19:59:00
My Email:
LENORE1231@aol.com
Heart child's name: Jeffrey Thomas Cameron
Heart child's defect?: HLHS
Child's surgeries?: Norwood 6/24/96; Glenn 1/23/97
City/State/Country: Cromwell, CT USA
Comments:
Very good job! I'm printing up a copy for LITTLE HEARTS, the support network for parents of CHD that I started this year. Your story has and will touch many families! Together we can show there is Hope for HLHS!
dinah62 - 11/11/98 14:19:53
My URL:
http://members.tripod.com/~dinah62/index-5.html
Heart child's name: Matthew John
Heart child's defect?: Hypoplastic Left Heart Syndrome
Child's surgeries?: Had 3 surgerys
City/State/Country: Moorhead, MN
Comments:
I was surfing the net and came across Ben's homepage. You have a beautiful child there. Those little guys are fighters. I have a grandchild that was born in April 26 1997 with HLHS. We said a lot of prayers for him and told him how much we loved him. I have started a home page for Matthew so there is so much to learn about the heart. Now Matthew runs around the house. You wouldn't think he had a heart defect. PRAYERS do help. Bye for now.

 

BRENDA SATTLER - 11/11/98 03:15:26
My Email:
TSAT129918@AOL.COM
Heart child's name: LOGAN
Heart child's defect?: HLHS
Child's surgeries?: 8-96, 2-97, 4-98
City/State/Country: ESSEXVILLE, MI
Comments:
OUR LOGAN IS THE BEST GIFT WE HAVE EVER RECEIVED IN LIFE. WE HAVE BEEN THROUGH SO MUCH WITH HIM; WE CAN'T HELP LOVING HIM SO DEARLY. EVERY DAY I THANK GOD FOR HIM AND I NEVER TAKE FOR GRANTED WHAT I HAVE BEEN BLESSED WITH. MAY GOD BLESS YOU AND KEEP YOU IN HIS CARE.

 

Diana Harvala - 11/09/98 00:50:35
My Email:
glenharv@portup.com
Heart child's name: Max Jeffery
Heart child's defect?: HLHS
Child's surgeries?: Norwood
City/State/Country: Ishpeming, MI USA
Comments:
Hi Ben, My name is Diana and I am Max's mommy. Max was born on 4/10/98 and had his Norwood on 4/16/98. Max is now in heaven with your big brother. We wish you the best in the world. Good luck! You are a very handsome boy! Sincerely, Diana

 

Sharon Harvala - 11/06/98 13:08:27
My Email:
glenharv@portup.com
Heart child's name: Max
Heart child's defect?: hypoplastic left heart syndrome
Child's surgeries?: Norwood Procedure
City/State/Country: Ishpeming, MI USA
Comments:
Hi, I hope your son continues to improve. My grandson is Max, or I should say was Max. He passed away on June 29th of this year, only 2 months old. We miss him terribly. My daughter, Diana, is doing as best she can. I read all that I can about HLHS. We aren't really sure what happened with Max but we're hoping to find out. He was a wonderful baby. I love your Ben pages and I wish you all the best.

Alice Sibigtroth - 11/04/98 03:34:00
My Email:
(Care of) janisk@dc.jones.com
Heart child's name: Mary Alice
Heart child's defect?: HLHS, ASD, VSD, Coarctation of the Aorta, Straddling Tricuspid Valve,
Child's surgeries?: Omni Procedure (modified Norwood)
City/State/Country: Manassas, Virginia
Comments:
My good friend, Janis Kirkman has been doing my research via internet on HLHS. I know she has signed your guest book, I wanted to sign it myself because I wanted you to know how much of a blessing it has been to be able to share your experiences. Mary Alice was born on 7/31/98 not 7/1/98. She was diagnosed with HLHS following the diagnosis of an imperforated anus only hours after delivery. By the end of the day she was born, Janis delivered pages upon pages of info about HLHS. Benjamin's story was included. 4 days later, Mary Alice was medivac'd to CHOP. 2 days later she underwent her first surgery. Reading Benjamin's Story was such a blessing because I was able to have an idea of what I was about to embark on. I appreciate you including your thoughts and feelings; it helped me be more at ease through this difficult time. Mary Alice is doing well, during her last visit to the Cardiologist, we found that her sats are around 72, that worries me a little because she is only 3 months old now, and one m nth ago they were high 70's. The next surgery will be planned when her sats are around 65 - 70, or 6 months, which ever comes first. My question to you is do you leave Benjamin at a day care? Luckily, I have wonderful baby-sitters (for my son Robby, 18 months old) one of them is an EMT, but I am still afraid of leaving her for any length of time. I have always worked, and had planned on being a working mom, due to finances, but I can't imagine going back to work. Any advice? I also want to know if you have any info about the cause of HLHS. Doctors have danced around that question, I don't know if it is due to lack of information or what. Thank You a thousand times for the hard work you put into this web site. You inspired me to keep a journal of Ma y Alice's day to day life. PS - E-mail me @ Janis' address until we get our computer on line. Coming soon I hope!

 

Kelly Boston - 11/03/98 20:32:31
My Email:
Bostonspin@aol.com
Heart child's name: baby girl Boston
Heart child's defect?: ? Due March 1999
City/State/Country: Indianapolis, IN
Comments:
What a doll, little Ben is adorable. My daughter has been diagnosed with a potential heart defect from an ultrasound last Friday. We won't know what we are facing for about 3 more weeks.