“It was just another Sunday of pregnancy. We were preparing as a family to greet a new child at any moment.
We cleaned all day and did every piece of laundry in the house, which seemed like 638 pieces and may have been since we had a family of five at the time. The entire day I was fatigued and nauseated. I presumed it was due to the impending birth of our fourth child, Lincoln, because my three previous pregnancies concluded in exhaustion and nausea.
My middle child and I went to the mall to purchase an attire for his soon-to-arrive sibling. By the time we returned home, I was so exhausted and queasy that I could hardly move. Tomorrow, I would call the doctor.
The contractions began around midnight or one o’clock in the morning, so I presumed that was why I had spent the entire day feeling so awful. Twelve hours later, I was delivering our very first baby daughter. This was the moment I had been anticipating since we learned we would be having a fourth child, but the elation was brief. Our infant was not wailing, and everyone in the room appeared both frantic and silent. I don’t recall exactly what was said during those moments because they are somewhat hazy, but I do recall that they asked my partner to accompany them outside. Our three sons were born in the Neonatal Intensive Care Unit, so it would have been strange if everyone had remained in my room and I got to hold a newborn. When asked what her name was, I responded, “Lincoln Riley Pool.” This must have been a clever strategy to divert my attention from the activity in the hallway.
Riley re-entered the room and I believe, so as not to frighten me, did not speak much. He stated, “I’ve seen enough episodes of Chicago Fire to know that the situation is dire.” They were required to resuscitate her and insert a breathing apparatus down her trachea. I told myself there was no reason for concern. We’ve been here before. Perhaps not precisely here, but we’ve had two premature babies and one child with a rare genetic disorder, and everything came out fine, so this situation would be comparable. The neonatologist entered our room shortly after the baby departed, which had never previously occurred. The neonatologist NEVER came to find me; I always had to locate them a couple of days into our NICU stay. He stated, “We’re not entirely sure what’s going on, but the baby is extremely ill.” She is a critic. We are making every effort possible. Like Riley, I’ve seen enough episodes of Grey’s Anatomy to know that you should never hear the phrase “we are doing everything we can.”
They allowed me to go to the NICU in a wheelchair while I was still quite unresponsive, which had never happened with my other NICU infants, so I knew the situation was grave. I believe I was shocked the first time I saw Abraham Lincoln. I had repeatedly assured myself that she would recover, and it was the nurses’ and physicians’ responsibility to prepare me for the worst. I had no notion she would appear so drab and grayish. The neonatologist and nurses had no idea what was going on or why she was in such a condition, but they had me sign consent form after consent form to keep her alive. She was promptly administered hypothermia to preserve ‘whatever brain tissue was left.’
I pondered what they meant by any remaining cerebral tissue. Why do we store cerebral tissue for a newborn? They explained that it was impossible to determine how long she had been without oxygen, but that it had been long enough for her to have sustained cerebral damage. She had virtually no blood in her body, so they tested my blood for fetal cells. The following day, they informed me that my blood contained a significant number of fetal cells and that we had experienced what is known as a maternal fetal transfusion. It is a form of placental abruption in which the baby’s blood enters the mother’s body. This is the reason why I was so ill on Sunday. We have different blood types, and when her blood began mixing with mine, I became exceedingly unwell. Everything began to make sense.
They began a full-body blood exchange transfusion in which the remaining blood in her body was removed and replaced with fresh blood. As soon as that was completed, blood and platelet transfusions were performed because her blood was leaving her body. Her kidneys were failing, and she was receiving life-sustaining treatment. The neonatologist repeatedly informed me that her condition was life-threatening and that he had never witnessed a baby in this condition recover. She was severely sedated and experiencing convulsions. On day 14, we would know the extent of brain injury, and if her condition permitted, she would undergo an MRI. On the fourteenth day, she was stable enough to undergo an MRI. I was able to hold her because she had been weaned off the ventilator, and I did so all day while I awaited the results of the MRI.
At approximately 8:00 p.m., a doctor arrived. She sat down with the most solemn expression and stated, “The MRI reveals that your daughter has periventricular leukomalacia.” The prognosis is bleak. I wish I had better news to report. The neurologist will be with you shortly to explain what this means.’ WHAT?! Outlook not good?! Be in sometime?! This was inadmissible. After shedding a few tears, I did what everyone else does and turned to Google. What a horrible notion! When I decided I’d had enough, I embraced Lincoln and said, ‘I vow we’ll do this together, and I’ll make sure you overcome the odds.’
The following day, I contacted the neurologist as early as possible until he ultimately agreed to speak with me. He explained that there is no treatment or cure for PVL, which is caused by the lack of blood flow and oxygen to her brain at birth. He predicted that she would be blind, never walk, never speak, never be able to grasp objects, and never live a normal existence. Another neonatologist in the room stated, “We need you to realize that her life will not be normal in any way.” She will be completely dependent on you. We should probably discuss a permanent feeding conduit.
Riley and I left that conversation feeling defeated and defeated, and 14 days later, when we left the hospital, we still felt this way, but I never lost hope that she would overcome the odds piled against her. By merely surviving and leaving the hospital without a feeding tube, she had defied the odds. She was vigilant and cheerful. She appeared to be a typical infant with the exception of missing motor milestones.
Lincoln is currently two years old and has attended 464 therapy sessions. She is courageous, loving, kind, and strong.
She is still missing motor milestones, but her personality compensates for her lack of motor skills.
She attends Little Light House, the most enchanting place on Earth, where all of her classmates are unlike you and me. Some have cerebral impairment and epilepsy like she does, while others have Down syndrome and other conditions.
She just learned how to stand with the aid of one hand, and she’s scooting around like nobody’s business in a gait trainer. She is everything the physicians predicted she would not be.
She can feed herself, communicate, and chant the alphabet. Sometimes I miss the daughter I had hoped to have, but my life is so much better with Lincoln in it than it would have been without him. When you read our story, don’t feel sorry for us or how different our lives may be; instead, use us as a source of inspiration for whatever you may be facing. Remember us if you’re ever given a dire diagnosis that makes your days seem shorter or harsher, and don’t let a diagnosis define you or hold you back.”
This account was submitted by Lauren George of Tulsa, Oklahoma, to Love What Matters. Observe her travels here. Submit your narrative here. To receive our top articles, sign up for our free email newsletter.
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