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Avatar universal

Platelets / Edema

Hi my twin girls were born at 29 weeks on June 14th and the eldest has been battling infections for 3 weeks and the medical team have been unable to identify the cause of the infection.  Her platelets disappear rapidly and she has now had more transfusions than I can keep track of. Edema is also an issue and she is swollen all over her body. Her tummy was so distended, they thought that there was an infection there and actually operated on her today, only to find nothing.
I'm desperately worried, please advise if you have any suggestions for causes and treatment.
Many thanks
Edinburgh, Scotland
7 Responses
1731970 tn?1328090670
Hi, I'm sorry to hear that poor little things. Unfortunately there is no peadiatricians on this site at the moment. Our daughter weighed in at 990 grams when she was born and we had a struggle she is now nearly three. These tiny babies are much tougher than we think. They get sick really quick but before you know it they bounce back. Keep strong this is a really tough time for you. I hope evreything gets better really soon. Is your baby being fed breast milk or formula. With formula sometimes they have a reaction. With her tummy they probably aren't feeding her anyway.Have they done genetic testing to see if there is a genetic reason for the low platelets? Keep in touch there are lots of people who have similar experiences and hopefully they will have some ideas for you. Take care
Avatar universal
Thank you.
She successfully weaned off TPN for 2 weeks then developed what was diagnosed as a mild case of NEC. She recovered in a week. Then got ill with this infection which she has been suffering from for 2 weeks. She has been on TPN and breastmilk only. The consultant is going to change lipids to one based on soya and fish oils so it is gentler on her liver.

We have ruled out bowel issues, abscesses, her gut and intestines are fine. She has a strong heart and good lungs. Genetic issues have been ruled out as her platelets were fine and then plummeted with the 2nd infection and keep disappearing - they are below 10.

The medical team are doing everything and are brilliant but keep drawing blanks so any experiences would be welcome.
1330108 tn?1333680904
I'm so sorry, what a stressful time for you. I wish I had some answers for you. I don't have any experience with that. My little one while preemie made a quick exit from the NICU only staying 12 hours after I was discharged and no complications. You and your family will be in my thoughts and prayers
Avatar universal
Thanks both. I'm pleased to say that although we never identified the infection, Anabelle has made a rapid recovery once on the right anti-biotics and from having had the operation where they removed some excess fluid from her gut.
Such a relief.
Thanks again.
1330108 tn?1333680904
So glad she is doing well :)
2129656 tn?1335489626
My granddaughter is a twin who was born on February 16 2012 at 26 weeks. In the womb she was diagnosed with Trisoma...(heart defect) that  requires surgery as soon as she is strong. Plus she had genetic testing done which determined Di-George Syndrome. She was flown to Penn State Hershey Medical Center due to bowel issues. Now that is under control but she has excessive swelling (Edema) that doctors are saying is coming from her capillaries. Her brother is in the NICU at our local hospital he is having trouble with breathing but he has come a long way from 1Lb 8oz at birth (his sister too same weight) to 4Lbs 15 oz. We are not sure what my granddaughter weighs now because of the Edema. What can be done? Doctors are baffled.
Avatar universal
My son have been in the nicu for almost 4 months battled infection on top of infection he now has crazy crazy adema to the point his skin start to crack doctors in pennslyvania dont what else to do he is suffering and keep gainging more fluid he barely can breath born at 1lb 8oz he is 4 to 5 pound over weight please desperate mom cant lose her 1 son my daughtr was also a preemie today makes 1yr born at 1lb 130z made it please any advice prayers have been none sto
Hi I'd like to know how your baby got through ? My baby is going thru the exact same thing and is 4 months in the NICU already also and really bad edema , did they ever get his/her edema to swell down ?
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