Support and Activities Reviews

Support and Activities Archive Service

Newest Review: ... with a rare CHD called pulmonary artery sling. I found out soon that the mortality rate is very high in the first few months of life. But surrounded by cardiologists and cardiac surgeons, I knew we were in good hands. After further testing and scanning, they could see he had a malrotation of his intestines, that needed repairing before too long. he was operated for that at the day he was 2 weeks old. Shortly after this surgery, we found out he has a unique translocation of two chromosomes, 4p+ and 18q-. I guess this tells you nothing.. Thats what it did to us, as well. We were told that most of Noah's features was because of this trans... more

Customer Support and Activities Reviews (2)

tpcthyra
Support and Activities: Unique!! (510 words)
by - written on 02/12/01, updated on  03/12/01 (Very useful, 110 readings)
Rating:

3 months ago, I gave birth to a special little boy called Noah Sebastian. Noah is not like other little boys. Noah is unique. In my womb, he was diagnosed with a congenital heart defect. They said he might have chromosomal abnormalities. I was offered an amniocentesis, but declined, knowing I would never terminte in any case. Noah was born after 7 hours in labour, induced at Guys Hospital in London, on August 24th 2001. After a quick cuddle, he was whisked away. Shortly after, I was told he had hand contractures and rocker bottom feet, and his willie had a funny shape. But hey, he was breathing and that was all I cared about. After 2 days in NICU, he was ...  Read the complete review

writer29
Make them listen! (Revamped Diagnosis then bewildrement) (759 words)
by - written on 28/11/01, updated on  08/12/01 (Useful, 88 readings)
Rating:

I have a three year old daughter who was diagnosed with Cerebral Palsy at 22 months. I had known that there was something wrong with Keisha the day she was born, but no-one would listen to me. She would twitch intermittently from birth. That was the only sign of something wrong until she came off breast milk onto formula when I went back to work when she was 6 months. The change was instant. She was suffering from chronic constipation. It was absolutely heartbreaking. The first time it happen, I didn't know what was going on. When I told my health visitor she told me I must have reduced her fluid intake despite the fact that I was almost screaming at her ...  Read the complete review