By Becky Miller
The birth of a child is, arguably, one of the most exciting moments of any parent’s life. In our case, our son’s arrival definitely was exciting, but it was terrifying, too. On April 10, 2013, at 35 weeks’ gestation, we welcomed our son, Connor Lee, into the world. He weighed 5 pounds, 10 ounces and measured 19½ inches in length. He also happened to have an additional, unique characteristic that doctors couldn’t diagnose initially – a dark purple and extremely swollen left arm. Connor quickly was introduced to me and then whisked away by a team of doctors with Dad following closely behind.
After what seemed like an eternity, the three of us finally were reunited. Connor was peacefully sleeping in his room in Children’s neonatal intensive care unit (NICU). A feeding tube had been placed, and he was hooked up to IV medications – scary, but a normal, familiar sight to any parent that has had an infant in the NICU. Not so familiar, however, was Connor’s arm. The swelling had increased, and it had begun to change colors, with parts of it beginning to appear black. Doctors were able to determine that Connor had a neonatal arterial thrombosis – more commonly known as a blood clot – that had developed in an artery in his upper-left arm. Doctors said they were unsure of when it formed, but based on the damage to Connor’s arm, they hypothesized that it had been in place for anywhere from four to eight weeks prior to birth. Connor was unable to move his wrist or hand, and doctors couldn’t find a pulse below his elbow.
The first 48 hours of Connor’s hospitalization were filled with more questions than answers. Words and phrases that terrified us became part of normal, everyday discussions: amputation, disability and skin grafting, just to name a few. We became familiar with a phrase that we quickly learned to hate: “Wait and see what will happen.” Connor’s medical team told us that his was a case unlike anything they had seen in the NICU before and they were not willing to make any drastic decisions too quickly. Connor’s unique and complex situation crossed many specialties. We like to say that his NICU room needed a revolving door – when one doctor or specialist walked out, another (or two or three) walked in. In the first weeks of his life, he was seen by hematologists, a plastic surgeon, orthopedic surgeons, a neurosurgeon, the skin integrity team, pain and palliative care, speech therapists, occupational therapists, radiologists and, of course, the neonatology team.
Finally, around day 20, Connor began showing signs of improvement. His arm slowly began to heal and his clot started to shrink. We will never forget the first time we heard the neonatologist utter the word “home” during rounds. Based on the complexity of Connor’s case, our social worker helped arrange a care conference that allowed the various medical professionals following his case to weigh in on how we could best move forward. Connor had improved to a point that he no longer needed NICU care, but he continued to need daily wound care. With the help, support and incredible selflessness of some of the integral members of Connor’s care team, we put our heads and hearts together and devised a discharge plan that would allow Connor to come home. We collaborated, shared concerns and ultimately came up with a plan that ensured Connor’s and our family’s needs could be met. On May 3, 23 days after birth, Connor was allowed to come home!
Since leaving Children’s, Connor has exceeded the expectations of his care team. Having been a baby boy that once faced the threat of becoming an amputee, Connor has come farther than we thought possible. He has learned to crawl. He can pull himself up and move along furniture. And, most noteworthy, Connor occasionally is using his left hand to pick up objects of varying sizes. With each of these achievements, we constantly are reminded of how much Connor’s care team did for him. We are incredibly grateful for the amazing love, care, compassion and honesty that the staff at Children’s showed to Connor and our family during a completely terrifying experience. Today, as we celebrate his first birthday, we can, without a doubt, say that Connor would not be where he is today without the amazing team at Children’s!