HI, My name is Jennifer. My son's name is Zachary. I was born with a murmur and at 4 years old had my aortic valve replaced. I had aortic valve stenosis. I then had is permanently had it fixed at age 11 with a medal valve. My dr. at Kaiser should have had me on a blood thinner, but only had me on half an aspirin. 10 yrs. later, right before my 21st bday, I had a major TIA and had emergency surgery through Sutter. We found out that my valve was clotting over because of lack of blood thinner, also they told us the medal valve was a size 21, they lied, it was a 16 and so it was too small to begin with. I had my vavle replaced with a cadaver valve and have been good for 10 yrs and no medication.
I was always told my defect was a fluke and wouldn't be passed to my kids...... I was induced at 36 weeks, my son was born and taken to the nursery for normal stats and cleanup. Within 30 min. he was taken to the NICU. They didn't think it was that bad, just that he was a preemie and needed some oxygen. The next day my husband had went to my mom's to shower, I was sitting there completely exposed and double pumping. His dr. from the NICU came in, said your son has Tetrology of Fallot, he basically has a whole in his heart and requires surgery, We'll keep you posted. And walked out. I started balling. The social worker just happened to be outside (every NICU baby is assigned a SW) and heard the whole thing. She came in and calmed me down, then went and got his nurse. She came to my room and calmed me down, and they all worked very hard to fix the situation and give me more info. (The doctor got into trouble)
We were told he was a Pink Tet, not a blue Tet... which basically means his isn't the worst case. Pink Tet's don't have as many issues with oxygen, where blue Tet's usually have trouble breathing, or stop breathing. He had an NG tube because of him being preemie and because of the stress that nursing could put on his heart. We had to teach him slowly to nurse, 1x a day for a week , then every 3rd feeding, then every other, etc. etc. Eventually a month later he was only nursing, and no tubes. They decided to watch his heart and try to get him as big as possible before surgery since he wasn't having much issues. (By the way he was 5 lbs. when born) So after a month in the NICU he finally came home. He was home for a month and had surgery at 8 weeks at Lucile Packard Children's hospital @ Stanford.
He is now 18 months and his cardiologist says he's doing Great. He will have to have one of his valves replaced eventually, but he said that would be 20-40 years from now. Who knows how the technology will be in 20-40 yrs.
I'm looking forward to meeting the rest of the Moms and Heart Babies!!! Wish I new about this when I was going through it.
Thank you!!! What kind of heart condition does your kid have?
My son also has Tetrology of Fallot. Feel free to message me.
My ds also has TOF but we have a much different story than yours, he was a blue tet.
Quoting ahenderson0709:
My ds also has TOF but we have a much different story than yours, he was a blue tet.
How is he doing?
Quoting Wishing2BMommy:
Quoting ahenderson0709:
My ds also has TOF but we have a much different story than yours, he was a blue tet.
How is he doing?
He is doing good for now. He has tons and tons of heart Cath procedures to go and a valve replacement, where they will surgically implant stents between 5 & 6. but right now he is doing good, just trying to catch up on milestones.
amnio test came back
- Wishing2BMommy
on Oct. 26, 2011 at 1:00 PM