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Pediatrics open heart surgery. Do you have any stories?

My son 10 months old is having open heart surgery in the last week of March. I'm just looking for any one who has had any experience with their child having open heart surgery. I want to hear both sides, so if you have a story and it's not the happiest, it's ok. I do realize that their are two sides to this proceedeure. Even if you haven't had any personal experience, but you've had someone close to you go through this that will due. Please only serious answers. This is not the kind of question to have fun with. This is a serious situation, and i'm in need of serious guidence, and advice. I would like to add that the condition that my son has is called Tetrology of Fallot. For the last 10 months his condition has been improving. The condition consists of four defects; the first is a large VSD, ventricular septal defect ( for all who dont know what that is, it's a hole in the septum, the wall that divides the left side of the heart from the right). The second is a pulmonary stenosis ( narrowing of the pulmonary valve). The third is a right ventricular hypertrophy ( when the right venticle thickens because the heart is pumping harder than it should to move the blood through the narrow pulmonary valve). The fourth is an overriding aorta (the defect is in the location of the aorta, instead of being attached to the to the left ventricle allowing only oxygen rich blood to flow through, the aorta is between the left and right ventricles right over the VSD. As a result the oxygen poor blood from the right ventricle flows right into the aorta. Instead of into the pulmonaryartery So far he has been able to, by himself heal all of his defects on his own, except for the stenosis. He still has a small hole remaining in the septum. Which is pulling the mitrial valve into the septum, causing a small leak. And that is what will be operated on. I've looked over the proceedure, and of coarse it looks cut and dry. but thats never who it goes. If you've had a surgeon make any mistakes during your childs heart surgery please let me know what it was and how it was dealt with. Also how your child is doing.

Public Comments

1. Our Daughter has had 3 open heart surgeries and a number of Balloon Angioplasties as well as a stent. So much depends on what defect she was born with. Some procedures are more routine than others so it really depends on the defect and the procedure. Our experience was not so good in that there were complications in all three procedures and a surgical error in the 3rd. In addition, we do not believe that the 3 surgery was necessary. I would add that most of the people we have talked to have had excellent results, we were just the small % that did not. If the issue is not urgent and you can afford to get a second opinion, I would strongly urge that you do so. There is no downside. Also, please visit www.childrensheartfoundation.org. There is a good resource book online that may answer some of your questions. Also there is a good book called 'The Heart of a child' which is a good reference.
2. Hello! My son was also born with TOF. Unfortunately his was very severe and he had his first open-heart surgery ( A B-T Shunt) when he was 3 weeks old. The only problem that he had was because he had went from having barely any blood going to his lungs and back into his heart, with sats 60% then to having abundant blood flow and because he was not used to that he failed - his sats raised to one hundred% and then everything dropped - blood pressure, respirations and it took them about 3 minutes to recsessiate him, but they did and he was fine after that.He did absolutely amazing and he was only in the hospital for 6 days. for the next 8 months he did very well but by the time he was 9 months old he out-grew the shunt, so it was time for his "full repair". So he was 9 months old when he had his second open-heart surgery. He was in in surgery for a little over 6 hours! I was scared out of my mind, but at that point, there is no other option. He came out of surgery COVERED in tubes and bandages, (I have a few pictures if you would like to see) and it was hard to watch him in pain. My son did extremely well after that - he was out of the hospital in 8 days and started crawling just 2 weeks later!!! He is now 2 1/2 and still going strong. He will need another surgery (pulmonary valve put in) here soon, and I know he will get through it! CHD babies are amazing and so strong. Some after surgery tips: *Buy lots of button, zipper, and snap of front shirts and sleepers because it is really hard on a baby that just had open-herat surgery to raise their arms above their head so this will make it very easy to dress him and get to his incision for cleaning and checking. Sleepers are the best! *Limit the hands touching him and kisses being givin. CHD babies get sick EXTREMELY easy ( my son is actually sick right now) and all the germs from hands and mouth can make him sick, so just politely ask people to ALWAYS wash their hands before touching him and to limit kisses. People understand - believe me! * Keep his incision and other places that are healing (where he had i.v's and drain tubes) very clean, ask the hospital for some sterile water to take home and clean it with ONLY the sterile water a few times a day. Keep it covered with gauze or other light bandaging (only the top needs to be covered all the time, by try to keep light, soft clean clothes over the incision. *They will tell you this but ABSOLUTELY NO PICKING HIM UP UNDER THE ARMS FOR AT LEAST 6 WEEKS! That can be a hard one, especially at 10 months old, but make sure everybody that will be around him knows it and try to even post little notes to yourself, over the car seat, over his crib, because sometimes in those mid-night wake up calls from him you may not be thinking of it but it can be EXTREMELY harmful to him. * He wont be able to tak a bath for a few weeks so what I did was lay Kendetrick down on his changing table and give him a bed- bath washing only his body, then when he was clean and dressed I would get a big bowl of warm water and wash his hair separately this way he didn't get too cold =) *Hmmmmnnnnn that is all I can think of for now, but if anything else pops in my head I will come post back!!! Good luck to you and I am sure your baby will get through it great! If you ever want to talk to another mom with a TOF baby for advice and support please feel free to e-mail me anytime. I am very involved in the CHD community and know ALOT of other parents helping their baby fight the #1 birth defect in America! Good luck to you and your family!