Another Heart Surgery

A.- My son had a rare heart defect also. He had Critical Aortic Stenosis, which basically means that his aortic valve was almost closed and did not allow blood to flow from his left ventricle through the rest of his body. He also had several other minor heart defects. He had a heart transplant when he was 2 1/2 months old. I don't know exactly what you are going through but if you need to talk let me know!

hi well A. my son also has down syndrom but he only had the right asv repaired when he was born he had 2 holes in his heart but they waited until he was 13 months to do his and the one hole was closed the other was open but he is 6 still in diapers dont talk just says a few words i know its scarry for you and hard on him to go through so much in his little time did the docs say really why he had to have so many open heart operations thats a ot for a 15 month old to go through but i know it could be worse there is a group on yahoo called downs heart list you can go on there and get more advice i think there is someone on there thats there son has the same thing just not so many opperations plua i go through with my son every4 months he goes under for his ears constatly iwth infections i have a 12 year old son and also a 2 year old daughter which she just turned 2 on the 17th and she has turner syndrom so i go through a lot but if you would like to keep in touch with me im here for you and here to help you as your son gets older i will answer your questions siunce my son is already 6 and hes in kindergarten please feel free to write me ____@____.com my name is H.

Hi A.!
Oh the things families go through! Your son is a champ!! It's amazing how resilient kids can be!
Our situation is a little different, but I understand what you are going through. Our son had a very serious heart defect (Hypoplastic Left Heart Syndrome with Intact Atrial Septum) and lots of caths and surgeries, including an in-utero procedure before he was born. It's very scary as a parent, but the opportunities created by modern medicine are truly AMAZING!!
I had no idea how common congenital heart defects were and how many families have been through what you and I have. There are lots of people out there ready and willing to offer support and experience. Kudos to you for reaching out!
What hospital do you go to? There should be lots of resources available through the social work department, parent and family networks or your local pediatrician or cardiologists office. Lots of families keep in touch through carepages. We started a myspace page and were able to network with a lot of people from all over the world who could offer support and share experiences. (Our page is www.myspace.com/roccosheart if you're interested).
There are lots of support organizations and groups for families living with Down Syndrome and Congenital Heart Defects. Perhaps a google search of your area may be helpful or talk to the social work department and have them put you in touch with the right group.
We started a non-profit organization called Rocco's Heart - an HLHS Foundation. The organization works to fund research, raise awareness of CHDs and to help to support families during extended hospital stays. We are just getting started, but want to help in any way we can, even if it's just a listening ear. Our email is ____@____.com or give a call to ###-###-####.
Please feel free to get in touch with me anytime and if there is anything I can do, please, please let me know. We will send lots of positive energy your way and keep you in our thoughts. All our best and keep us posted....

Hello! Congrats on your baby boy. We have a daughter who is 4 years old with Down syndrome. While she was born with heart defects, they are not as severe as your son's. She was born with AVSD (atrialventricular septal defect). She had surgery when she was 4 months old. If I can be of any help (a shoulder, a set of ears, as a friend, as an errand runner, etc.), please let me know. My personal email address is ____@____.com, have you contacted the Down Syndrome Association of Central Ohio? I am their secretary. We could provide you with references and resources at www.dsaco.net. I do feel your pain and frustration and fear. Peace and take care. I look forward to hearing from you soon. Z.

I am very sorry about your son. I do not have a child with heart defects but, I do have a dear friend who is 24 years old and has had 5 valve replacements in her lifetime along with neumerous other surgeries and mishaps. She even had to have a toe removed. Her las surgery was a 2 months ago and she is back at work, healthy, and optimistic. She was not supposed to live to see her 3rd, 13th, or 21st birthday according to her doctors. She has beat the odds and is a true inspiration to me and my family!!! God Bless You!!! I can only imagine how you must feel, god must know that you, my friend, and your son have strength I will never have. My thoughts and prayers will be with you.

My son doesn't have down syndrome, but he does have a heart defect called Wolff Parkinsons White syndrome. He is only 6 weeks old. I myself could use someone to talk with about heart problems. My son when he is 3 years old is going to have to have surgery. I dread this, but know in the long run that it is better for him. I wish you all the luck with his next surgery.

Though my daughter does not have the same problems, (she has a partial trisomy - extra piece of chromosome), I can sympathize with you. It is so very hard and scary to have a child go through these things, and it is even worse when you feel so alone and feel like no one else has been there or understands. I will pray for you. I do recommend a comforting website, that has given me comfort: http://www.biblestudents.com/andgodcried_01.cfm
Wishing you all the best for you and your dear one.

Hi A., I have not gone through this, but wanted to tell you that my thoughts and prayers are with you and little boy. Please keep us posted on how his surgery goes and God bless you and your family.

First I want to say God bless you and your son. My father had a transplant and lived 11 years so I have been in more waiting rooms for cardiac caths than I wish to remember. The difference was he was my father not my child.

I do need to tell you that our 3rd daughter died of a terminal birth defect nothing at all related to downs syndrome. But in our research about birth defects we found out how very many parents do not carry these children to term. You are a brave and blessed woman to mother such a special child. My admiration for parents of Down Syndrom children really grew when I found that out.

One of your previous responses sounded like they could get you into contact with other parents with similar difficulties. I know they can help you more than anyone else. I would be happy to help you any way I could. Also if your hospital has a child life specialit dept talk with one of them about contecting you with parents or other for support.

God Bless,
J.

Hi just wanted to let you know they thought my daughter had downs but turned out she did not but she has had open heart surgery at eight days old and looking at two more she has hypoplastic left heart syndrome they had to rebuild her arota put a blalock taussing shunt in her so her blood bypasses the heart she has a murmor really she only has half a heart she is missing some chambers they are trying to rebuild her heart so her right side can do everything the whole heart does life expectancy is unknown babies usually pass away before they are five there is a hand full of babies out there that have made it to 20 and if i know my lil laynee she will out live me :) she will prove all them dr's wrong i wish you the best of luck and prayers and thoughts are with you also i wanted to let you know there is a website i use called www.carepages.com it is full of support loving caring family that goes threw the same thing my carepage name is laynee if you want to check her out or maybe start one of your own its a wonderful site very helpfull at times of need good luck to you all

Sounds like you and your son have been through so much! I have a couple of distant relatives that have boys with Downs. I don't know if they've had heart defects or not but I can check.

Just also wanted to let you know that you and your family are in my prayers

Hello A....I do not have a child with downs syndrome, but my son does have an atrioventricular canal defect. He had the corrective surgery in January of 2000.His was a partial. He is now 6 and doing well. Last June he had a second heart surgery to remove sub-aortic stenosis and to repair his mitral valve.I have a page set up for him and I would love for you to view it. go to www.carepages.com. You need to make up a username and password. Then type in his carepage name peanutsheart (just like that no spaces)I would love to hear from you.

Hello A.-
My mother is a retired nurse and cardiovasular tech.-Through the years she told me stories of "connecting" people with similar health issues that were feeling like they were the only one out there or at a lose on how to find others --
Have you tried asking the Cardiologist & staff for assistance in possbly connecting you with other parents? Offer up your information to them and ask if they could possibly pass it along to other parents. Or next time your at the doctors or hospital talk to the parents you see there. Ask the Social workers at the hospitals, they may be able to refer you as well. Good luck & God Bless!

My son who just turned 3 also has Down sydrome he has an ASD & PDA but no surgery yet. He seens his cardio. in a couple of months he will probably be having his 1st heart catherization. I am of no help. But, just wanted to send you my prayers & good wishes. If you ever want to just "talk" or "vent" please feel free to email me. Take care,