Neonatal Compartment Syndrome

September 2, 2007, twelve days before my due date, I began having contractions and losing my mucus plug. It was my first pregnancy and I was totally in denial that I could actually be in labor, so I waited to go to the hospital until that night at 10:00pm. By the time I got there I was already dilated 4 cm and my water broke a few minutes after being checked in. Once my water broke my contractions got stronger and closer together. I was given an epidural and was finally able to relax, when I started to feel a lot of pressure. The nurse checked me and I was already crowning! Everything happened so quickly that they weren’t able to call my doctor in time, so the OB on duty ending up delivering my baby girl at 2:44am on September 3.

I was twenty years old at the time, and had had a healthy pregnancy with no complications, other than some unexplained high blood pressure the last two weeks. However, I felt that I needed to switch hospitals at the last minute to deliver at one with a Neonatal Intensive Care unit. I quickly found out why. Faith was born 19 ¾ inches long and 7lbs 6oz. As the nurse was cleaning her off she noticed the blood not washing off her left hand and forearm. I watched her facial expression go from calm to complete panic in an instant. There was no skin on Faith’s arm from the elbow down. The nurse brought it to the doctor’s attention and they handed me my baby and quickly rushed off to call the pediatrician. I got only a few minutes of skin on skin contact when they came in and whisked Faith away to the NICU.

At first they suspected Amniotic Band Syndrome (ABS), but ruled it out because there were no ligature marks. Then they suspected a blood clot and called in a hematologist to run some blood test, but they quickly ruled that out too. Numerous specialists were called in to see her during her first two days of life, but they all walked away baffled, until a hand surgeon came in to see her and thought her hand resembled Compartment Syndrome, a common crush injury in adults and children, but something he had never seen in a newborn before. He began researching and found just 24 cases of Neonatal Compartment Syndrome and went straight to the operating room to get ready for surgery. He called me on the phone in the Neonatal ICU without even meeting me in person and informed me that with compartment syndrome you typically have six to eight hours to operate, and that he wouldn’t even wait until that afternoon. He said he was in the O.R. and was ready for her, and that the nurses had some paperwork for me to sign.

There I was a young, first time mom, faced with a huge decision, but in that moment I felt so much peace. I knew exactly what needed to be done and didn’t question it for a minute. We signed the papers, and sent our daughter off to surgery. Two more times the doctors came to us in the first three week’s of our baby girl’s life, telling us she needed another surgery and both times we responded with the same peace and confidence, simply saying, “Okay.” The doctors complimented us on our easy going attitudes and we explained that there was a reason we had picked the name Faith. We had a strong faith in God, and knew she was going to be okay; ultimately it was only a hand, in all other areas Faith was a perfectly healthy baby.

By three and a half weeks Faith had had three surgeries, her fingers and wrist were completely contracted and unable to move, and she had all the skin and muscle tissues from her elbow to her wrist down removed, because they had died. She had special bandages her dad and I had to change every few hours, but was otherwise thriving. She was breastfeeding exclusively, gaining weight and becoming more alert. The doctors decided it was time for her to come home, so that week we finally got to bring our baby girl home, along with three boxes of medical supplies for her bandage changes, and an order for a home-care nurse to come in every couple of days to monitor her open wound. Within a couple of weeks scar tissue formed and she no longer needed any bandages, however her hand and wrist were completely non-functional.

At six months old the bones in her forearm broke and would not heal, and the doctors began talking about amputation. I was nervous to make such a drastic decision and began praying continuously for an answer. A couple months later, during tummy time Faith took off her removable cast, she had on her forearm, and began trying to push herself up to crawl. This would have been an amazing milestone for any baby, but for a baby with broken bones it was extremely painful. Her forearm was bending in half and she was crying in pain and at that moment I knew without a doubt it was time to schedule her amputation.

A week after the amputation, Faith began to crawl. A couple months later she began to walk, and since then, nothing has slowed her down! Faith will be nine this year and there is nothing she can’t do: she surfs, she skates, she rides a bike, ties her own shoes… The list could go on and on. She has been an inspiration to me and so many others with her confidence and positive attitude!

Kids can be cruel, and people’s stares can really get to you sometimes, but if you ask her if she wishes she had her hand back she would say no, without any hesitation. She is happy just the way she is.

Image Credit: Coli Lennox

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Colie Lennox is from Southern California. She grew up visiting Maui, and always knew it was her home. Colie moved to Maui in 2015 with her husband and their three kids, and quickly adjusted to the island life. They are excited to welcome their fourth child this August, and to raise all four of their children here in Maui.

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