|
|
|
Hi, My name is Kristi and I have a 7 month old daughter who was diagnosed with BWS at birth. I had a very difficult pregnancy with high blood pressure and diabetes. I was on bed rest for at least 3 weeks and delivered my daughter Lizzie 5 weeks early. She weighed in at 7.0 lbs. 19.5 inches long. She has the enlarged tongue, ear crease, stork bite, hypoglycemia, and very large umbilical cord. We were lucky we had a doctor who recognized it right off. She scared us to death 3 days after birth I finally got to see her then the doctor came in and told me "I have bad news your child has Beckwith Wiedemann syndrome and she's going to die." Well, on her fourth day she was transported to a specialty NICU. (I want to say I stayed in a Ronald McDonald house for the month she was there they are wonderful, you meet people who are going though about the same thing and they become friends for life) She stayed in the NICU for a month having feeding problems and low blood sugar. They wanted to put in a g tube and I refused. I started going for every feeding (which is very hard with a c section walking about a mile every 3 hours). For us all it took was someone who had the patience and wasn't trying to rush to get her to eat. We go for the ultrasound and afp test every 3 months. Thank God nothing has come up abnormal. She is now a healthy baby weighing in at about 19 lbs. and 26 inches long. She has some delays but she is getting therapies for them and coming along wonderfully. She also has an enlarged heart we have to monitor carefully and difficulty with her vision. We are taking her to have a CT scan done to check the brain waves to see how her eyes and brain are communicating. But in the last probably 2 weeks she has started focusing on things and reaching out trying to get them. If anyone wants to chat please feel free to email me. Having others who are going through this to talk to has been my saving grace. There is always a light at the end of the tunnel sometimes its just a longer trip to get there. God bless you all Kristi |
web master:
Disclaimer: All information on this site, except for that from the doctors and researchers, is given by volunteers and parents. The information given is non-professional advice only and is not meant to replace the medical expertise of your doctor. The creators of this web site do not censor or edit tips submitted and are not responsible for any errors or misinformation. Please consult your physician for more information on how best to treat your child.
this page last modified: 27/03/2007