Standing by Spencer: A Micropreemie’s Fight for Life

In January 2024, our world changed when, at our 20-week scan, we learned our baby was facing severe intrauterine growth restriction. Spencer was measuring over a month behind, with three umbilical cord complications: velamentous cord insertion, a single umbilical artery, and reversed diastolic flow. We were told that our chances of stillbirth were high, and intervention wouldn’t be possible until he reached 24 weeks gestation and 500 grams. We went home heartbroken, preparing for the worst.

In February, I was hospitalized with preeclampsia. After weeks of monitoring, our son Spencer was born via emergency C-section on March 8th, at 27 weeks, due to me developing HELLP syndrome and Eclampsia resulting in me going into multi-organ failure. Our tiny micropreemie came out kicking and weighed 1lb 2oz. Due to his extremely premature lungs, he was immediately placed on a ventilator.

Within a few days, he was diagnosed with bronchopulmonary dysplasia, which severely affected his lungs and led to secondary pulmonary hypertension. Along with this, he had two PDAs, a grade 4 and grade 1 brain bleed, and a cerebellum brain bleed. In the days following, he fought through setbacks, including two MRSA infections in April. Despite everything, he showed signs of improvement, and in May, graduated to the Non-Invasive Ventilator, allowing us to hear his soft cries for the first time—a moment we will never forget.

On his 100th day, Spencer’s health declined suddenly with another pulmonary hypertension crisis that nearly killed him. He was temporarily paralyzed and heavily sedated for three weeks. We held our breath as each day passed. That was the first time his team sat us down and told us they weren’t sure if he was going to make it through the night. By miracle, he did, and his pulmonary hypertension resolved.

Due to Spencer being so far behind developmentally and lacking a stable airway, we opted for him to get a tracheostomy to give him the best chance. Unfortunately, throughout his recovery process, he went through withdrawals. By the end of July, he went into his third severe pulmonary hypertension crisis.

In September, we transferred him to a specialized hospital as his condition continued to deteriorate. Doctors found that his kidneys were not functioning correctly, his adrenal levels were unstable, and his bronchopulmonary dysplasia had reached a critical stage. He developed large pneumatocele (air-filled cavities) in his lungs, leading to lung collapse and poor ventilation. His CO2 levels reached a critical point, and his pH dropped dangerously low. At our care conference, the doctors sat us down again and told us that his body was not going to sustain much longer. We were advised to make arrangements—a decision no parents should ever face. We baptized him, made family keepsakes, and held him close. Miraculously, his labs began to improve overnight, and he pulled through yet again.

On September 24th, Spencer coded on us unexpectedly, unrelated to his chronic conditions. They did compressions on him for 15 minutes until I made the most painful decision of my life and asked them to stop compressions. I will never forget that moment—the heartbreak, the pain seared into my soul. I prayed and begged God to save him. As I picked up his lifeless body out of the crib and cradled him, his heart monitor started picking up. The once loud room turned silent. Everyone, including myself, had the same shocked face. It was nothing short of miraculous.

We are currently consulting with the Children’s Hospital of Philadelphia, where they believe Spencer might benefit from a lobectomy to remove the damaged parts of his lungs. This surgery could help him finally breathe more independently and give him a stronger shot at coming home.

Spencer’s journey has been a rocky one. We’ve held our breaths for over eight months now. To this day, our sweet boy has received over 50 blood infusions, over 200 X-rays, over 60 echocardiograms, and has been manually bagged more times than I can count. He’s endured so much, and we are incredibly grateful for every day we get to spend with him.

As a military family stationed in Texas, we are staying at the Ronald McDonald House and spending anywhere from 8 to 16 hours per day in the NICU to be by his side. Going home is not an option due to his critical condition and the driving distance. In September, I had to stop working remotely to care for Spencer and manage my own health as I undergo treatment for my kidney issues. Being by Spencer’s side through this journey is both exhausting and essential.

We are so grateful for the nurses, respiratory therapists, and doctors who we now consider family. We have never asked anyone for help before this. Spencer is our only child together, as my health complications prevents us from having more children, making his life all the more precious to us. Any contribution will help us with the cost of staying by Spencer’s side. We are so grateful for every donation, share, message, and prayer. Thank you for being a part of Spencer’s story.

Update: Thank you all for your love and support. Our sweet boy sadly passed away on 04/01/2025. He was the fiercest fighter. We are not asking for donations, just prayers. He was our whole world. We are leaving his story up to spread awareness for Bronchopulmonary Dsyplasia.