Lisa Loretta

NICU Story

Our beautiful daughter, Lisa Loretta, turns 3 this coming February, 2005, and there are days that her seemingly boundless energy makes it hard to imagine that once upon a time it was not certain she would live to see the home she now "rules" – our mischievous little princess, with a smile that could melt a glacier and a string tied to her daddy’s heart that she can pull at will.

But her mommy and I need only close our eyes when we are holding our princess baby at night and we can be back in the GBMC NICU where we experienced the most intense and soul-searching days of our lives.

It was the morning of February 15th and my wife, Judy, and I were excited and enjoying the anticipation of our daughter’s imminent arrival outside of the operating room prior to Judy’s scheduled caesarian. The procedure had been moved up two weeks because her doctor thought the baby might have a gastrointestinal-track obstruction. A remote possibility of cystic fibrosis was the worst-case scenario with which we were presented. In retrospect, we were probably a little naïve, but we knew we had done everything "according to the book" in terms of her prenatal care and there seemed no reason why Lisa shouldn’t be as strong and healthy in birth as her big brother, Billy, then 19 months old.

Judy’s doctor’s decision to move up Lisa’s birth date was a critical one. It would be the first of a number of life-saving decisions made and actions taken on our daughter’s behalf in what would become a collective struggle not to lose our little girl. Unbeknownst to us, our unborn baby was living in an amniotic environment that, at some point, had become toxic to her. It will forever be a mystery as to what triggered the meconium discharge, but the placenta was contaminated with this waste (discovered post birth) and fluid that seemed uncharacteristic of "typical" meconium conditions. It may have been due to an in utero infection, but whatever its cause, time was now of the essence. Yet, as we joked about how our little boy would react to his new sister’s homecoming in a couple of days, we had no idea that in a matter of minutes our daughter’s life would be hanging by a thread of hope and the emergency medical care provided by the GBMC neonatal intensive care staff.

The concerned look on my face was all she needed. When Judy, whose vision was obscured by the sheets set up for the caesarian procedure, asked why the baby had not cried, all I could say was that the nurses were "working with her." It was a feeling more helpless than anything I could have ever imagined. Lisa’s lungs were completely aspirated, saturated with the same toxic fluid that filled the placenta – something we would learn later.

I had experienced the miracle of life with my son’s birth less than 2 years earlier, but the birth of a daughter is special to a father. I’m sure I speak for many fathers when I say that I fell in love with my little girl the moment I laid eyes on her. And nothing can be more distressing to a parent than watching your child struggling for life right before your eyes, while you stand there watching, powerless to help. My mind was racing at 1000 miles-an-hour. I knew of course that even with modern medicine tragedies could still, on rare occasion, occur during delivery. But our little girl could not be dying!! "No, No, No" screamed inside my head as I moved without speaking toward our baby. A very kind delivery room nurse interceded gently, asking me to stay with and comfort my wife.

The NICU nurses were working rapidly to resuscitate our daughter with a hand pump, forcing air into her lungs. Within minutes, the neonatologist on duty that Friday morning was over our daughter and working very hard to save her life. At that moment, we knew the only thing we could do was pray for our little girl, as staff rushed to get Lisa on a state-of-the-art oscillating (600 cycles per minute) respirator that would have to reverse her oxygen/carbon dioxide imbalance quickly. Dr. Pomerance explained the options to me; if the respirator did not suffice, our only realistic option would have been an infant heart-lung machine at probably Johns Hopkins. This would have entailed an ambulance trip the baby likely would not have survived.

In her own recovery room, Judy was in anguish over not being able to be with Lisa. We had family members with Judy, so virtually all my time was with our baby and the NICU staff through the first 48-72 hours. When a priest was brought into the NICU (day 1) to administer sacraments to our daughter, I had a sense that some expected her not to make it. But now that I was with her – and couldn’t bear the thought of leaving her – I refused to believe that we were going to lose her. We weren’t going to do anything but get her better and bring her home. But it was to be the struggle of a lifetime, for Lisa and her family. Her numbers began to turn around, as they needed to, but we began the "NICU dance": 2 steps forward and 1 (or 2) steps back.

Unlike most of the babies requiring an extended stay in the NICU, our baby wasn’t premature, save for the 2-week early C-section. No, she wasn’t in there because she arrived significantly early, but rather because she arrived on death’s doorstep, "stillborn" as my wife and I overheard during the initial life-saving actions taken by two of those incredible NICU nurses who save babies for a living. (And we pay athletes and entertainers all that money?) Had it been several years earlier or were we at a community hospital that didn’t have such an advanced technology unit and skilled neonatal staff, there would have been no hope for Lisa. Thank God – then, now, and always – for the nurses, nurse practitioners, doctors, and respiratory therapists of the GBMC NICU!

Beginning that Friday and for the next 10 weeks, my wife and I would become fixtures in the NICU, as I realize so many parents have before and since our stay. We had only a vague idea about neonatal intensive care and virtually no a priori appreciation for what was involved. Did this ever change, and fast! There were so many peaks and valleys – and that was just the first day! I think most parents would agree that the NICU experience is not anything you can be prepared for in advance. The experience really has to be lived, either as a parent or caregiver, to be understood. And what an awesome group of medical professionals we had to care for our baby girl, and to support us.

While the NICU stay is (hopefully) a once-in-a-lifetime experience for NICU parents, for the professional caregivers of dozens of critically ill babies (simultaneously!) it is their daily life. And the unit runs 24x7, 365 days a year. It’s hard to be objective when your child is your exclusive focus, but this GBMC unit and its staff were impressive to behold. From the lead doctors to the social workers and receptionists, the unit was consistently conscientious and intuitively understood the needs of worried parents. The nurse practitioners and respiratory therapists were amazing, and words cannot begin to describe what those extraordinary NICU nurses and their loving care for our daughter meant to us, and will always mean to us.

It took several days before Lisa was stable enough for the diagnostic tests required to determine whether a GI obstruction was still an issue, albeit secondary to her lungs. Still, it was critical to determine whether her GI track could even handle food, whether surgery would be necessary, etc. Well, the good news was that the GI track was clear. The bad news was much worse. Scans and subsequent diagnostic procedures that involved me getting inside of imaging devices and holding Lisa, revealed that she had a large neuroblastoma on her liver. A highly regarded pediatric oncologist and a surgeon were brought in to counsel us; the NICU staff understood better than Judy and I how dire her circumstances were. By itself, the neuroblastoma was deadly news. On top of Lisa’s lung condition, it was simply too cruel and unusual to contemplate. Yet, that seemed to be her fate.

It was February 28th, Lisa’s originally scheduled birth date. She was now 13 days old, unable to breathe on her own, and undergoing exploratory liver surgery to better assess this large malignant liver tumor (it was considered too large and invasive for removal). No parent should ever have to awaken to that kind of day. Even an inveterate optimist is going to have difficulty finding a ray of hope in the scenario that Lisa faced that fateful Thursday morning. Judy and I had heretofore refused to accept that she wasn’t on the road to recovery. Though she still required artificial respiration and oxygen, her lung performance had improved markedly over the preceding 13 days. But now this – an invasive cancer with a high mortality rate for otherwise healthy babies. Where was our baby going to find the strength to withstand chemotherapy and radiation? And was this possibly too much to even consider putting her through?

It does not usually turn out this way when confronted with the prognosis our baby daughter, Lisa, faced that morning. We will never understand the vagaries of fate, but sometimes – even in our darkest hour – there may be hope in something or someone greater than us.

In a moment, it was obvious that the tears on Dr. Pane’s face as she came into the family waiting room after the operation were tears of joy. All the diagnostic tests appeared to have been wrong, or we had all been witness to a miracle. Dr. Pane was not the only person (or doctor) who shed tears of joy that day. Lisa came out of surgery with an incision that extended the width of her upper abdomen. She was bruised and looked like she’d been through a 15-round fight, but she never looked more beautiful to her father. Although lab results would later confirm it, all her doctors were in agreement that Lisa did not have cancer after all!! Whether or not we witnessed a miracle is something unknowable in this life, but I do not discount it. Humility and profound gratitude were the order of the day; my prayers of thanks were never more heartfelt.

Lisa’s road home was to be a long one for a "full-term" NICU baby. Surgery set back her lung recovery substantially in the short term, introduced a morphine dependency that would have to be broken, and generally complicated things for a while. But Lisa is a very strong, and very strong-willed, little girl; something that her mother and I bear witness to on a daily basis. When she got tired of hearing her father singing Surfer Girl in her ear, she decided it was time to come home. Over the course of those 10 fateful weeks, we formed bonds with a nursing staff and with individual nurses and other caregivers that will always be cherished and will never be forgotten.

Our families were tremendously supportive, and grandma and grandpa in particular. They saw to it that little Billy would make frequent visits to the hospital, providing the best morale boost Judy and I could have received. On Easter Sunday, the NICU waived a rule and allowed us to bring little Billy in to see his baby sister for the first time. It was an incredible moment, for which we have always been grateful. The "crash course" we received in respiratory therapy, oxygen equipment, monitors, etc., prepared us well for the mini-medical unit that our home would become.

We finally brought Lisa home from GBMC on April 24th, a late birthday present for her mother. She would have a feeding tube inserted at 8 months at Johns Hopkins Hospital, but was able to come off oxygen one month later, and she hasn’t required it since. Our baby, whose initial lung x-ray was a "white-out" and the new unofficial "10" in the GMBC NICU for how bad lungs can be, was off oxygen before her first Christmas. And here we are, 2 years later – her recovery continues to amaze us all. By the grace of God, the exceptional care of the GBMC NICU, and the love of a family, Lisa Loretta was able to come home and be united with her best friend, her big brother Billy. It doesn’t get any better than that.

Bill Scanlon
father of Lisa Loretta Scanlon
GBMC NICU stay:  February 15th – April 24th, 2002