Those of you who follow us on social media know that this fall, we took in two babies, one right after the other, who were born with a rare birth defect called Gastroschisis.
These babies were found with their intestines on the outside of their bodies, which happens when the muscles which make up a baby’s abdominal wall don’t form properly. Scientists believe this happens approximately during the fourth week of pregnancy, and while no one knows for sure the exact cause, a high percentage (at least in the U.S.) are born to teenage moms. I still remember the very first baby we took in with this condition, as I stared at my computer for quite a long while thinking, “That just isn’t possible.” Now of course I know that while rare (approximately 1 in every 5,000 births), babies with this condition can do very well with immediate treatment.
If you would like to see a photo of a baby with this condition pre-surgery, you can click on this link, but I give a warning in advance that many people might have difficulty seeing it! Please do not click on it unless you are okay with seeing a pretty graphic medical photo. Our volunteers actually found this photo a bit awe-inspiring, to know just how amazing these repairs truly are. The baby in this photo did beautifully and is now a very healthy and wonderful boy.
In an ideal situation, a doctor would know in advance, through ultrasound, that a mom was expecting a baby with this condition. Then the doctors and surgeons could be immediately ready to treat the baby upon birth. Even when a parent doesn’t know in advance, if a child is born in the hospital, he or she would have access to immediate treatment as well. In our work however, we serve babies with this condition who come from a very hard place — those who have been abandoned, often outside, with their intestines exposed to the elements.
The first baby we took in this fall was little Christi. She was found with both her intestines and liver outside her body, and her orphanage called us immediately for help. We were able to move her to the best pediatric hospital in her province for emergency surgery.
There are two standard treatments for gastroschisis. When a baby has a small amount of intestine exposed, often just one surgery is required. Doctors put the intestines back in the belly and stitch up the abdomen. However, if a large amount of intestine is exposed, or if the baby has a small abdominal cavity, babies often need a staged repair. Doctors form a plastic pouch or “silo” around the intestines, and every day a little bit more is put back inside the abdomen. This is the procedure that Christi needed, and over a week long period, she gradually had everything lowered back into her abdomen.
Christi was one very determined little girl, as she fought off both an abdominal infection and issues with her breathing, and came out on the other side fully healed. Christi now lives in our Heartbridge Healing Home, and she is gaining weight beautifully and becoming very interactive. She should not need any more surgery if things continue well, and she should grow normally from this point forward.
A few days after we received baby Christi, we got a call from an orphanage who had found a baby with gastroschisis in a much more critical condition. Little Joe had been left outdoors and wasn’t immediately discovered. Sadly, his intestines were exposed to the air overnight, drying a portion of them out.
We rushed Joe to the hospital where it was determined that he would need a staged surgery as well. Little Joe’s abdomen was finally able to be closed, but this little boy has been in the ICU for several months.
Normally in Chinese hospitals, family members are not allowed in the ICU due to space issues, and so babies are cared for by nurses on shifts. Last week this hospital told us they would allow a full time primary caregiver to come in and be with Little Joe, as they know he needs lots of TLC to gain his strength back.
Because some of Little Joe’s intestines had been damaged by the elements, he has struggled to eat by mouth and his abdomen is often hard. We are all hoping that having a full time nanny loving on him will help his spirits and get him on the final path to recovery. We are providing him with specialized formula which we hope will aid his recovery as well. Just look at Little Joe’s bright eyes!
Like Christi, Little Joe is definitely a little fighter. We hope very soon he can be discharged to healing home care.
That is probably more information than you probably needed to know about this very rare birth defect, but we know many people are surprised that babies can be born with this condition and survive. And then when you add in that the babies in our hands with gastroschisis did not receive immediate medical care at birth, I know you will join with me in celebrating these two precious babies for the miracles they are.
~Amy Eldridge, Chief Executive Officer