This is the story of Baby M. It’s a little hard for me to write, as I’m afraid my words will not give justice and sufficient honor to her three-week long life. She had a huge impact on our entire community, and is a patient I will certainly never forget.
Baby M’s mom was 32-weeks pregnant with twins when one of our family medicine doctors noticed something abnormal on the ultrasound. Baby M had gastrochisis, a birth-defect where the intestines are born outside of the body. I got called in around midnight after the mother had delivered at 32 weeks (dangerously early for babies at our hospital). Both babies were put on C-pap, given
nasogastric tubes, IVs, fluids, antibiotics, and Baby M’s intestines were placed in a sterile plastic silo-bag above her abdomen. The hope was that with gravity, they would work their way back into her body so that our general surgeon could close them inside. We monitored her and her sister closely for the first few days and they seemed to be growing and getting better despite their young ages and Baby M’s condition. We were able to give Baby M TPN (total parental nutrition), which was delivered via a public bus to us every day from San Pedro Sula, a city 5 hours away.
After less than a week’s time, our general surgeon was able to close her up while leaving two parts of her intestines open- the higher part for her to poop into a colostomy bag, and the lower part for us to inject the poop from the bag into via a small tube so that she would get as much nutrients as possible. We were almost comically overjoyed when she started pooping from her anus. She also started drinking milk and was growing. Our entire community was so encouraged!
The twins’ mother is a teenager and without much familial support, and therefore I spent a lot of time over the next 3 weeks going to the hospital and helping her feed the twins every 2-3 hours so that she could have periods of rest. I got to know her and the babies’ father well. We celebrated Christmas and New Years together, toasting with Coca-Cola. We tiredly shared the struggles and joys of life with newborns and laughed every time one of the babies would inevitably have a “blow out” right AFTER we took off the diaper.
Unfortunately, just 3 weeks and 2 precious days after birth, Baby M started to decompensate. She spiked a fever and was having trouble breathing/maintaining her oxygen saturation. She had developed an infection in her intestines with the infection working its way into her bloodstream. We were giving her pressers and fluids to maintain her blood pressure, c-pap to support her oxygen needs, and antibiotics to fight the infection. Still, she was only getting worse. I held her twin sister in one arm as my other arm rested on the back of the mother who was sobbing in the bed. Finding words in English are hard enough to give to the mom of a sick baby, but add that to the language and cultural barriers and I was struggling to speak. I thought back to the conference I had attended on pediatric palliative care 2 years prior where the mantra was “be honest and kind.” I explained to the mother just how sick her baby was, but also how hard we were fighting to keep her alive. I told her how much our community cared for her and their family. I prayed hard.
Baby M died later that night. Despite our best efforts, we could not save her. Now the young mother and father must continue caring for one delicate baby while mourning the loss of the other. They are staying in a small house just outside the hospital so we can continue to monitor the growth of the other baby and give any needed support. Please consider praying for Baby M’s parents and the medical team. I can only hope that our efforts touched this family. I hope the time they spent with Baby M, despite being immensely painful, can be remembered as incredibly special.