Does Any Moms Have Any Children with a Heart Defect?

My daughter was diagnosed with Down's at about 18 weeks gestation. Prenatally, I was told that she had a VSD. When she was born, I was told she had an ASD. When she was about five weeks old, I was told that she has an AV canal, and would need surgery wehen she is about 20 lbs. After that I was told she had no congenital heart defects. In march, I was told that she had aductis. now, I have no idea what is wrong with her. I am very frustrated because she isn't growing, and shes eating well, but shes not gaining adequate weight, which I have been told is a common symptom of heart failure. My Doc.s aren't really doing anything and have no answers for me. In fact, I was told that Strong mem. doesn't even do heart surgery, that if she needs surgery she'll have to go to Cleveland or pittsburg. So, I guess that I can tell you to be glad that your child is getting adequate medical care, becasue my baby isn't and I am very frustrated about that. However, there isn't much I can do. She is seen at the clinics at the best hospital in the area, and supposedly has a very knowledgable cinical team. She also sees a neurologist, an endocrinologist, a pulmonary specialist, a feeding specialist, a developmental pediatrician, the cardiologist (obviously) as well as a genetecist and her primary physician. So, I understand your frustration, but as I said, you should feel blessed that your baby has gotten the care that he/she needs.

Good Morning -- I am just curious as to why little Matthew had to have surgery. I was born with and grew up with a heart murmur and a hole in my heart. I am now 46 -- in 2003 I contracted a blood infection that attacked my heart and had to have open heart surgery to repair 2 valves and repair the hole. I have had very few problems since -- but was told that the reason the infection went to my heart was because of the murmur and such --- so this maybe a blessing in disguise for your son.
I am sorry for rambling and probably didn't help at all

My son was born with 2 holes in his heart,a PDA and a VSD, One, the VSD closed on its own, the other was repaired at Strongs hospital. He was also born with other birth defects but is doing incredibly well now. He is above average in school and just had his occupational therapy discontinued. All I can say is be patient children born with problems seem to be so loving as they grow up. I cried many tears over my son asking God why but I found out why, if he wouldn't have been born that way, I probably would not be the kind of mom I am today. Just love on your son that's about all you can do.

My daughter is 17 months and has Down Syndrome. She just had open heart surgery to repair a hole in her heart. She was released today from Schneider Childrens Hospital in L.I. I was amazed that they released her in 3 days! She just had it done on Tuesday. The doctors said that she is healing great and where astonished when they did an echo and found that her enlarged heart was no longer enlarged! The only thing wrong was that she has a tiny amount of fluid in her lungs but they said that will go away. She is not on any meds and her stiches will desolve on their own.
As soon as we came home she just started looking better, playing and babbling. I know there's still a long road ahead but the out look is looking much better now.

Hi D.,
My son had open heart surgery at 3 days old. He has Tetralolgy of Fallot with Pulmonary Atresia. I understand your feelings and if you wish to talk more, let me know!
Kelley

Hello D. H,

I am so sorry. I know of a children's heart fundation that may be able to help you. Their e-mail address is ____@____.com was set up by a family friends who had a child with heart problems since the day he was born. They offer lots of help.

jenn

I have a 4 yr old who is about to have open heart surgery the only thing i can say to do is to make sure you make tim and have people around to help im use to having to go to alot of drs and give alot of medicine to my dauhter because she was born early and with that came alot of other problems