Heart Defects

Lisa - posted on 06/01/2009

I don't know how many of you are dealing with this; but years after the trauma of the hospitalizations and surgeries, our child was still dealing with the emotional trauma of being held down for all those needles. He had flashbacks of a particularly nightmarish experience just before surgery. We've been through a lot of counseling with him, and things are getting much better now. (He also has Asperger's Syndrome.) A few things we learned along the way: Don't let the nurses always put you in the position of the "bad guy" who holds down your child for all the blood draws and IVs and such. You need to be the one who can comfort and care for your child after the hurt and not be part of the hurt. They need to be about 12 before they can comprehend that all the things you've done for them were for their best and not just because you let people hurt them. If the first counselor is not making progress with your child after a couple months, don't hesitate to find another. Ask questions like you would of a doctor: Have you counseled people in this situation before? Do you have any personal experience with a disabled or seriously ill child? How are we going to measure progress? And so on... We went through several counselors over even more years before we got an accurate diagnosis and adequate treatment. He was our first child and we didn't know any better. The other issue with having a first child with problems is having other children and raising them in the chaos created by the first child's issues. (If you want to talk about any of this, I'm here. We learned a lot of things the hard way and hope to help others avoid that road.
I'm so sorry that all of you have to deal with this stuff. You don't have to do it alone.

Rita - posted on 05/28/2009

My heart feels your pain. My son also named Jack was born 2 months early with his intestines on the out side of his body. He had to have surgery with in 8hrs. of brith. When I was only 12 weeks pregnant the doctor told use that he would be born with a defeact, but because he was early we had not finished prepareing. he had 5 surgeries before he was one. he is know 2 and 1/2 and doing great, just a little small. so hang in there it will get better, just stay by his side. lots of love and I will pray for your son. Rita

Lisa - posted on 05/27/2009

My heart goes out to you! (No pun intended...) Although my child appeared to be healthy at birth, they found his issues at 7 months. He's 13 and has a pacemaker and has had 8 surgeries over the years and lots of hospitalizations, mostly between the ages of 7 & 11 months.

Someone shared this with me when I was struggling with what my son can and can't do, and I thought it might help you ladies also. She told me that I needed to grieve the child I thought I was going to have in order to love the one I had to the best of my ability. I didn't get that right away; but she was right. Once I let go of the perfect, dream child (that doesn't exist), I was able to give my son more of my heart.

I hope that is helpful to you as well. If you want to talk or just unload some of what you're going through, I'm here...

Kelly - posted on 05/27/2009

Kristen .. wow.. I soo feel you. They didn't catch Jacob's til birth . He had tetralogy of fallot.. 5 defects. Had surgery at 8 weeks to put a shunt in and again at 10 mos to do a full repair. He is now almost 11 and although one side of his heart is enlarged he is otherwise a healthy happy boy. (seen in this pic) Texas Children's was just up the road when this was discovered so we were truly blessed!!!

Tina - posted on 05/27/2009

Hi, I just wanted to let you know you are not alone. We were also told at our 19 week scan that our son had a defect, and at that time we were told it was possibly Downs Syndrome. Nothing was said when he was born, however by 9months old he had trouble with thriving and gaining weight and keeping it on, so he was fed by nasal gastric tube. A geneticist seen him and told us the characteristics he had shown were that of Noonan Syndrome. However, at the age of 2 and a half years, our son, Bradley, had a life threatening event occur to which bought the Geneticist back on board only to tell us he now has Mitochondrial Disease - a deterioration of the brain. Well, we weren't expecting that. He is now 3 years old, fed by PEG, and is in a wheelchair.