Beckwith-Wiedemann Syndrome
Our girls
Our oldest daughter was born 6 weeks premature (7lb 4oz) in 1998 because I had pre eclampsia. She was 6 weeks early and med flighted to our nearest children's hospital. That's where she spent the next 11 weeks. 8 of those were on a vent, she had an ng tube for feeds (when she could have them), a lung biopsy to find out why it was so hard to get her off the vent, pyloric stenosis, and cleft palate which she would have surgery for later. She ended up with a g tube to finally get out of the hospital.
Our second daughter was born 9 weeks premature (5lb 4oz) in 2001. I was already on bed rest for pre eclampsia near the children's hospital, so she was sent over by ambulance. She was there for 11 weeks, also. She was on the vent for 4 weeks, had a nissen, ng tube, cleft palate that she would have surgery for later, and also velopharyngeal insufficiency that required 2 more surgeries.
They both have scoliosis, just enough to be watched, not treated. The older one had her kidneys watched until about three years ago. She has a duplex kidney on the right side. They both had the ultrasounds, never any problems.
They are now 19 and 16 today, and are doing great. Neither one of them had a TR, they both had speech, occupational, and physical therapies from when they got out of the hospital until they went to school, and speech a little while longer.
When we brought our first daughter home, I had to tell so many people what BWS was. Medical people included. It seems like so many more people know about it now. These kids of ours are great!
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