• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Neonatal Diabetes

M

mygirlpumps

Newbie
Messages
1
Hi All,

My daughter Sarah was born on the 28/11/08 at 31 weeks gestation weighing a tiny 735 grams.

Upon birth she was hyperglycemic and was placed immediately on an Insulin infusion. her bowels where malrotated and she had surgery in the first week.

At 3 weeks of age still being Insulin dependent we met with her Drs to be told that she had an incredibly rare condition of "Pancreatic Agenesis", she had been born without her Pancreas, they told us that she would likely pass away within the next few weeks.

Well she showed them what she was made of and bet the odds, she spent 16 weeks in Intensive Care before we got to bring her home and today she is 6 months old!!!!

She was on an Insulin infusion for the first 9 weeks, then we trialled lantus before going onto a Insulin Pump at 11 weeks when she weighed 1800 grams, she is on a Animas pump and going as well as expected.

Just wondering if there is anyone here with experience with Neonatal Diabetes

Cheers

Karina
 
hya and welcome to the forum,
sorry i cant give you any advice about your daughter, im sure someone will be along to help u soon :D
 
Can't help, but you both have my admiration.
What a wonderful child! I'll bet she's beautiful too!
Just thought of a suggestion.
This might be a case where Diabetes Uk would be helpful. their dietary advice may be useless, but they do try to help and support in all other ways.
 
I have no experiencees which are similar...but wanted to ad my best wished and admiration to the mix!! She sounds like Superkid!!
 
Your little girl must be a very special child, and has a very special mum.

love to you both.

Bernie

xx
 
I'm so glad she beat the odds and is doing well! Hope it all keeps going well for your little daughter and your family! :)
 
Hi,

How traumatic the news the Dr's are giving you must be making you all feel. Your post sounds like you are remaining as positive as possible and I wish you all the best to avoid too many future complications.

Two weeks after my son was born I got the diagnosis that he had Down syndrome and then he became a diabetic at 8 months of age. I have found the hardest part of having diabetes being that every single illness he has had has been as a diabetic and it is so very hard to manage in little kids at the best of times. I often wonder if he will develop complications earlier in life because he started younger than most.

I imagine that your daughter may be elligible for a pancreatic transplant at some stage in life. I gather she could be suitable as it wasn't her own immune system that destroyed her beta cells? Does she have any other problems or a genetic condition?

Anyway, your situation is a little more unique than most but my son, Khaleb, is now 2.5 yrs and doing fine with a good HbA1c of 7. I can tell you that my record for consecutive nights of sleep since Khaleb's diagnosis is 9. I hope you have a good support network and a helpful medical team.

All the best, Jen.
 
Back
Top