The following blog post was submitted by the mother of a former donor human milk recipient. Her story demonstrates the heart-wrenching experiences of families with fragile babies, and the critical importance of non-profit milk banking in supplying safe donor milk. Links have been created to explain some of the more medical terminology – explore as you would.
Hunter was born July 6, 2011 with jejunal atresia. A previous ultrasound at 34 weeks gestation, detected the obstruction as well as meconium in the fluid. My obstetrician reassured me that it was treatable; it just meant that he would need to have surgery and would spend a little time in the neonatal intensive care unit.
I went into labor on July 5, 2011 at 11:00pm. I was so elated to finally be having him and getting him the help he needed. The delivery was a lot more stressful than I could have ever imagined. His shoulders got stuck, resulting in a broken clavicle. The worst was yet to come. He got stuck again at his abdomen. I will never forget the look on my OB’s face as he started to panic and urge for me to push harder.
Hunter came into the world grey, swollen, limp and makingno sound. My immediate thought was that I was too late. The NICU nurses worked quickly to suction his lungs and when he finally cried, it was so faint. Apparently, his intestines had torn at the obstruction site and he bled internally while in utero. His belly was so distended that he looked pregnant. He was immediately rushed out of the delivery room and into the operating room.
The surgeon explained that it was the worst bowel obstruction he had ever seen and he has been practicing since the 1970’s. He lost a lot of blood during the surgery and was still losing. He ended up going into cardiac arrest but by the grace of God, was able to be saved. The doctors didn’t give us much hope, he was still losing blood and they couldn’t find the source. Hunter ended up losing one third of his small intestine, including his ileocecal valve resulting in Short Bowel Syndrome.
He stayed in a medically induced coma for almost 3 weeks, in which time his total blood volume had been replaced. He was on several rounds of antibiotics to clear up the infections. He was being fed through a central line and was eventually able to be fed breastmilk through an nasogastric (NG) tube. It wasn’t until he was almost 5 weeks old that I was finally able to hold him. It was the best day of my life!
I was adamant about breastfeeding him, but since I couldn’t actually hold him to nurse, I opted for pumping. He quickly developed Dumping Syndrome, which was devastating to him. The breastmilk was fed through the NG tube, only to go straight into his ostomy bag. He had absolutely no time to absorb any nutrients. We hoped that once he was resected, that the “Dumping Syndrome” would be resolved, but until then, the hospital gastroenterologist made the decision to put him on formula because it was more broken down. That was the worst decision he could have made. I continued to pump hoping he would be able to have my milk. I pumped for 2 months until I had nowhere else to store my milk. His freezer box at the NICU was full and both of my freezers at home were full. I was so devastated!
Over the next 4 months, Hunter struggled to grow, absorb and live. The NICU had done everything they could for him and encouraged us to seek more specialized treatment. We made the decision to transfer him to another hospital out of state, in hopes for more specialized shortgut treatment. The specialty hospital immediately put him back on total parenteral nutrition and Lipids, and donor breastmilk. I was a little freaked out by it, but was assured it was pasteurized and what he needed to thrive. The neonatologist explained about a recent study with breastmilk and shortgut babies. The breastmilk was shown to help the intestines grow better and faster.
It didn’t take long before we saw a huge improvement in his overall health. I tried desperately to restore my milk supply, but was unable to. Thankfully, the original NICU in Louisiana was so kind enough to ship all my frozen breastmilk to Texas so he could use up what I had. Once that was gone, he resumed the donor breastmilk. Hunter was finally able to go home on December 9, 2011. We still had a long road ahead, but he was stable enough to be home!
We had strict orders on the amount of milk he was to be given. He started off at only .5 oz every 2-3 hours, which gradually increased to 4oz in a matter of months! I know that without the donor breastmilk, Hunter would have died. His little tummy couldn’t handle the formula and I was unable to provide my own milk for him.
Today, Hunter is a very happy 20 month old! It’s still a bumpy road, but we’re seeing great progress. He has a g-tube now and is on continuous feeds for 20 hours a day. I just can’t thank you enough for donating your breastmilk! You gave my son a chance at life and for that I’m eternally grateful!