Complications After Premature Birth: Lincoln's Story

Every moment of Lincoln’s first two years of life held so much significance, so many life-and-death moments, that his mother, Shelley, had to keep an online journal on Caring Bridge to keep track of it all and update family members and friends. She had no idea when she started the journal that two years later it would have more than 200 entries.

In early December 2016, Shelley traveled from her home in Bucks County, Pa., to the United States Naval Academy in Annapolis, Md., to see a performance with friends and family. What was meant to be a quick, 24-hour trip became so much more.

One song into the performance, Shelley, who was 28 weeks pregnant with Lincoln, stood up, looked at her sister, Amy, and nodded toward the door. The expression on her face must have said it all. Shelley was rushed to a nearby hospital, where Lincoln was delivered by emergency C-section. At one point during the delivery, Lincoln didn’t have a heartbeat. Shelley’s husband, Dave, made it to the hospital from their home in Pennsylvania just in time to see Lincoln take his first breath. He weighed just 2 pounds, 8 ounces.

Complications after premature birth

Within 24 hours, Lincoln’s lungs collapsed multiple times and he struggled to breathe. He was intubated, had a chest tube placed and was put on a ventilator. He also underwent a blood transfusion and was treated for jaundice. His skin was so underdeveloped that touch hurt him. Even rocking him was too over-stimulating and could cause him to forget to breathe. To hold Lincoln, Shelley needed the help of a respiratory therapist and a nurse and had to sit completely still.

Shelley was holding Lincoln when the doctor told her he had suffered a severe bleed (hemorrhage) in his brain, likely as a result of his dramatic premature birth and the complications that followed during his first few days of life. A week later, the family learned that fluid from the bleed had formed a cyst and caused extensive damage to the right side of his brain. He also had hydrocephalus. Shelley and Dave were told Lincoln might not be able to walk, hear or see.

Searching for a pediatric neurosurgeon close to home

Shelley stayed in Maryland to be close to Lincoln while he was in the NICU, while Dave returned home to care for their other eight children. Each day seemed to bring more bad news for Lincoln. When he was 6 weeks old, the hydrocephalus had grown so severe it was putting a dangerous amount of pressure on his brain. Although shunts are very effective at lowering the pressure from the buildup of the cerebrospinal fluid in hydrocephalus, they can clog or need replacement over time.

Lincoln would need to be transferred to a hospital with a pediatric neurosurgeon to get the shunt. After researching their options, Shelley and Dave chose Children’s Hospital of Philadelphia (CHOP). CHOP has one of the top-ranked neonatology and neurology/neurosurgery programs in the country and is closer to the family’s home.

“We knew they could handle what is going on with him,” says Shelley.

Lincoln was transferred to CHOP. He weighed just four pounds when he underwent brain surgery to have the shunt placed. The next two months in CHOP’s Newborn/Infant Intensive Care Unit (N/IICU) were a rollercoaster, to say the least.

Finding comfort amidst the chaos

Lincoln suffered cardiac arrest multiple times and had frightening episodes of apnea and bradycardia, in which his heart rate and oxygen level would drop at the same time (one night, he had 14 such episodes). He was fed through a tube in his stomach (NG tube) and also suffered from gastroesophageal reflux. His care involved nearly every specialty at CHOP, including neonatology, neurology, neurosurgery, occupational therapy, ophthalmology, allergy, GI, general surgery, cardiology, pulmonology, endocrinology, physical therapy, nutrition, the Feeding Clinic, Integrative Health, Compass Care, speech and urology.

The experience was physically and emotionally exhausting for Shelley. Fortunately, she was able to get a room at the Ronald McDonald House just a few blocks from the hospital instead of having to drive nearly two hours to sleep at home every day. She and the other N/IICU moms there would eat dinner together and take turns giving each other advice depending on who had the worst day. She also joined a N/IICU support group run by a psychologist and a parent’s yoga class to cope with the stress of it all.

Another scare before going home for good

When Lincoln was discharged from CHOP at 14 weeks old, Shelley and Dave were thrilled to finally have their whole family together at home. But their happiness was short lived. Within less than 24 hours, Lincoln stopped breathing and turned purple. It was traumatic for the whole family.

Lincoln was life-flighted back to CHOP. He needed chest compressions during the ride, and suffered cardiac arrest in the Emergency Department. His shunt was failing and he needed emergency surgery to have it revised. While Lincoln recovered in the N/IICU, his siblings met with a child life specialist to talk about the trauma of almost seeing their baby brother die.

Lincoln was discharged from CHOP after a month-long stay, but six days later, the shunt failed again and he had to return.

“Shunts are a treatment for hydrocephalus and can be lifesaving, however, they are not a cure,” says Lincoln’s neurosurgeon, Gregory Heuer, MD. “Over time, like any mechanical thing, they can fail and parts can need replacing or fixing. Our goal is to minimize these events by doing things as well and carefully as possible.”

Dr. Heuer put a new shunt system on the right side of Lincoln’s brain. After a few more weeks in the N/IICU, he was finally discharged home for good.

Lincoln’s recovery and long-term outlook

Lincoln’s journey is far from over. The brain hemorrhage affected use of his right arm and his speech and caused mild cerebral palsy, which he was diagnosed with when he was 1. He has some gross motor delays, but is not nearly as delayed as his physicians expected him to be given what he’s been through, and continues to amaze his care team and his family. He has physical therapy, occupational therapy and speech therapy every week to help close his developmental gaps, and he will return to the N/IICU Follow-up Program every six months until he is 5 years old to monitor his progress.

“I really appreciate not just the skill but the caring the team shows Lincoln and our family,” says Shelley. “He’s not just a patient. He’s a person to the people at CHOP. It’s not just a diagnosis; they see him and his personality and are just really on his team. That means a lot to me as a mom.”

Lincoln is happy, smiles easily and laughs quickly, says his mom. He’s a fast-moving toddler who gives his parents a run for their money, literally, but they wouldn’t have it any other way.

“It was so hard to watch him hurt so much,” says Shelley, tearing up. “I will never forget that. And now he’s running, and I’m so happy about it.”