A car accident caused by a distracted driver when I was 17 weeks pregnant forever changed our lives, especially that of our unborn child. Following the accident, a chronic placental abruption would result in multiple trips to the emergency room, dozens of ultrasounds, many appointments with my OB/GYN and perinatologists, spending weeks on bed rest at home followed by 2 weeks on strict hospital bed rest, and would ultimately result in our daughter being delivered 4 months early.
I knew I didn’t have control over what was about to happen and clung to some words a dear friend sent me; “God’s timing is always perfect. He is rarely early and never late. It will take a little patience; it will take a lot of faith. In the end, His ways are worth the wait.”
You see, our baby was on the verge of viability. It’s different for every healthcare facility, but there are guidelines and policies on giving intensive care to premature babies. Neonatologists at Wolfson Children’s Hospital (Level IV NICU) will not perform medical interventions on babies born prior to 23 weeks gestation. We knew without a doubt our baby would arrive early, so we counted every minute of every day and prayed we’d make it to at least 23 weeks.
After stopping pre-term labor three times during my hospital stay, Leighton Marie O’Sullivan was born at 23 weeks, six days, via emergency C-section on October 11, 2014, at 2:39 AM, weighing just 1 lb., 8 oz. and measuring 11.5 inches. By the time she was delivered, the placenta was more than 30% detached and dusky, and I needed two units of blood. They quickly ran her over to us for a peek before rushing her off to the NICU where a team was waiting to intervene. She was beautiful and perfect. She was our sweet baby girl. She was super-duper teeny tiny! We didn’t know if we’d ever see her alive again, so we relished in that moment. She survived.
No matter how early a baby is born, even one day in the NICU is too many. And here in the United States, 1 in 10 babies are born preterm. Preterm is defined as a baby born alive before 37 weeks of pregnancy are completed. Depending on how early a baby is born, he or she may be:
- Late preterm, born between 34 and 36 weeks of pregnancy
- Moderately preterm, born between 32 and 34 weeks of pregnancy
- Very preterm, born at less than 32 weeks of pregnancy
- Extremely preterm, born at or before 25 weeks of pregnancy
The statistics for 23-week micro preemies are bleak; the survival rate is only between 15-30%, with 87% of those suffering moderate to severe neurological impairment. Leighton was born so early that her eyes were still fused shut, her skin was translucent, and most of her body systems were immature–especially her lungs. I had never heard the term micro preemie before, and suddenly I had one. Despite having my Bachelor’s Degree in Nursing and being an experienced pediatric emergency nurse, I was completely overwhelmed when I saw my daughter. She was the smallest baby I’d ever seen!
I was in a state of shock and disbelief. I remember having to sit down after seeing her because I felt faint. I remember not going back to see her again until that night. I wouldn’t get the chance to hold my sweet baby for 35 long days, and honestly, for a few weeks, I was okay with that because I was too nervous. She was so fragile and connected to too many machines to count. Her skin would tear at the slightest touch. I constantly prayed that she’d grow bigger and stronger and that she’d be alive the first time I felt her in my arms.
We were fortunate enough to have help from our family and a part-time nanny to help care for our two sons. Our friends stepped in to make sure we had meals and anything else we needed. Leighton spent 118 days in the NICU fighting for her life, and I was able to be by her bedside every single day. Her doctors and nurses became our family. They admitted at times they were nervous about her and what the outcome would be. I talked to her, prayed over her, read and sang to her, pumped breastmilk for her, and advocated for her.
Most days I felt helpless while she suffered from hundreds of needle sticks and X-rays, 35 days on an oscillating ventilator followed by CPAP and a series of nasal cannulas, multiple blood transfusions, numerous echocardiograms, medical treatment for a PDA (patent ductus arteriosis), treatment for bacterial pneumonia, a collapsed lung and chronic lung disease, numerous re-intubations, apneic episodes, treatment for stage 3 ROP (retinopathy of prematurity) with Plus Disease with a chemotherapy drug injected into each eye, head ultrasounds and a brain MRI, jaundice, anemia, severe digestive issues resulting in a punch rectal biopsy to rule out Hirschsprung’s Disease, an upper GI, a barium enema study, nasogastric tubes, orogastic tubes, replogle tubes, and numerous PICC lines.
The constant one step forward, two steps back was exhausting…we couldn’t wait to get off the so-called “rollercoaster” that everyone spoke of. But as difficult as it was for us, it was infinitely harder for Leighton. She carries scars on her body to this day marking her difficult journey. She is a fighter.
She was discharged home on February 6, 2014, on oxygen and an apnea monitor. What we didn’t realize is that once home, we had at least two appointments a week, and other than that couldn’t bring her anywhere nor have anyone over because of her suppressed immune system. We still see ophthalmology, pulmonology, GI/nutritionist, physical therapy, occupational therapy, speech therapy, and have frequent weight checks. Our family received mandatory flu shots and Leighton gets monthly synagis shots during the winter. We’ve been obsessed with her weight gain, how much she’s eating, and how often she’s pooping. And heaven forbid she sneeze or cough! She still sleeps with a pulse oximeter; she still sleeps in our room! Her older brothers are extremely protective of her, know to change their clothes as soon as they come home, and never touch her face or hands. But she is more than worth it.
Almost all micro-preemies will endure many tough months in the NICU. Unfortunately, some live with the lifelong effects of prematurity, while others will grow up not showing any signs of their early birth. We have witnessed the power of prayer and friendship through Leighton. We thank God every single day for the miracle that she is because we know many families aren’t so blessed. She has increased our faith and taught us that His plan is bigger than ours and that He will use our situation to His glory. She is an absolute joy to be around, is almost always smiling, and loves playing with her big brothers. We have simply been amazed by her strength and determination, as well as God’s grace. She has forever changed our lives. She is a miracle.
We recently celebrated Leighton’s first birthday, and we’re happy to say that things are finally getting easier. We ALL survived her first year! We are slowly getting back to normal–our new normal as a family of 5. We’re venturing out more now, so don’t be offended if we ask you to sanitize your hands. And please, whatever you do, don’t touch hers!