Noah: Despite Lymphangioma Diagnosis, Fetal Surgery Gives Boy a Fighting Chance

The 34-week ultrasound was supposed to be routine – to make sure that everything was okay with Noah. My belly had started to measure ahead, and we knew he had turned breech. The ultrasound would let us know how we were progressing. We just weren’t prepared for what we would find.

During the ultrasound, the technician discovered something troubling: there was a significant buildup of fluid in our son’s chest. After the maternal-fetal specialist reviewed a copy of the ultrasound pictures, we were immediately booked for an appointment the next day at Children's Hospital Colorado to figure out what was causing the effusion in our son's body. Once there, we went through a battery of tests – an MRI, a fetal echocardiogram, more ultrasounds – all in one day.

Noah was diagnosed with cervical lymphangioma (cysts in the lymphatic system) and a congenital hydrothorax, which was causing the significant fluid buildup in his chest and leading to immune system complications. In one day, we went from thinking the pregnancy was normal, to realizing our unborn child would possibly need surgical intervention directly after delivery.

Treatment for lymphangioma at the Colorado Fetal Care Center

My progress and Noah’s treatment would be overseen by surgeons, physicians, and fetal experts from a joint effort between Children’s Hospital Colorado and the University of Colorado Hospital. While the team communicated the diagnosis and treatment options in a professional but friendly manner – helping establish trust with our family – we still feared for our son. It is both frightening and surreal to realize that what you thought was a healthy pregnancy was actually a baby with a slim chance of survival. It's terrifying from a place and a depth I didn't know I had inside of me. You want to believe that the expertise of the doctors and the strong life force of your baby will be enough, but you have to come face to face with what it would mean to walk out of the hospital without a baby.

Due to his fetal anomaly, my delivery would occur in the Maternal Fetal Care Unit at Children’s Colorado, and Noah would have an extended stay in the Neonatal Intensive Care Unit (NICU) once he was born. I never imagined I would be induced, but the team at the Maternal Fetal Care Unit did an amazing job making a less-than-ideal situation feel as special and as comfortable as possible. Immediately after his birth, Noah was rushed to the NICU. The fact that this multidisciplinary team was so prepared to treat his condition and ready to act the moment he was born made the difference between our baby having a fighting chance, and likely not having a baby to take home at all.

With Noah in the NICU, the next weeks were a blur of tests, labs, praying, and waiting. Watching our baby's chest leak fluid at an alarming rate was the single most terrifying thing I have ever gone through – not at all how we planned welcoming our first child into the world. After a week of drug therapy to try to stem his condition, we were told Noah's immune system was failing. The medical team made clear his system would fail completely if we didn't pursue more advanced intervention.

Our son fights for his life

Our surgical team, directed by Kenneth Liechty, MD, closed the cyst on the lymph node (sclerotherapy). The team performed a pleurodesis, a surgical procedure that prevents further fluid buildup around the lungs, which was our one hope for his recovery.

When he left for his surgery, I literally watched the seconds on the clock – for hours. When the doctor finally came back to tell us Noah had recovered from the anesthesia, it was like jumping into a pool of relief. We wouldn’t know for almost a week whether or not the surgery had worked – and I waffled between wanting to watch him every second of every day and wanting to ostracize myself because I couldn't stand the moment-to-moment stress of waiting to see if his lymphatic leak was slowing. I still remember the moment that the surgery team came back into our room to make sure the chest tube was properly placed – the surgery, they said, appeared to have fully stopped the symptoms. I think that was the moment my heart started to beat again. Follow up was a need, but they expressed optimism. I started to think that maybe Noah was in this thing to win it.

From that moment, the life-threatening gloom began to lift, with the possibility that Noah would make a recovery. And he did. It took almost a month for Noah's little body to recover, and every step was met with cautious optimism, hyper-vigilance, and creative problem solving from his doctors. Our physician team did an amazing job of prioritizing our worries while being supportive and honest about the gravity of his situation. It was a godsend to our family that our surgeon had successfully treated a case like Noah's before, knew what to look for, and understood what interventions worked.

Going home

Our surgeon, Dr. Liechty, likes to tell us this is a 'turtle race' – and it’s true. Because of the severity of Noah’s condition, we have months and likely years of out-patient visits and vigilance on our part to watch for any signs of additionally needed treatment. In the meantime, after more than a month in the NICU (a month and a half after entering the hospital), the words 'going home' were never sweeter.

Noah wouldn't have recovered without the competency and collaboration between many different teams – neonatology, hematology, genetics and surgery. When our baby’s life was on the line, these physicians took the time to personally talk to our family, to answer the hard questions, and to ensure we were coping with the realities of the situation – at the same time helping us process what we were feeling with the stress of a gravely ill child. We are forever grateful.

As for our little fighter, Noah beat expectations at every turn – which I can only attribute to his rebel spirit, and his doctors' care. He is so strong, yet even months later I can't think about how much he went through to get a chance at life without tearing up. Noah will never remember he was so sick. He won’t know he was so close to the possibility of death, and for that I’m also grateful.

I think I will carry it with me enough for the two of us.