Noah’s Story


Our lives were forever changed in September 2008 at my 21-week ultrasound. "It's a boy!" She said... "But there is something on his neck..." Diagnosed prenatally with a lymphatic malformation (large cysts on his cheek and neck), our relationship with Seattle Children's started before Noah was born. We made the 2 1/2 hour drive to UW bi-weekly throughout the rest of my pregnancy, and met several times with Noah's ENT team from Children's in preparation for Noah's birth. Several doctors from Children's were present at his EXIT procedure birth (a high-risk, very controlled c-section with intubation) at the UW Medical Center. Noah was taken by ambulance to Children's just hours after his birth.

 

We had no idea what our lives would be like from then on, but Children's doctors and nurses have held our hands every step of the way, meanwhile empowering us as parents. Noah was discharged just 10 days after his birth, with stable breathing but lots of trouble eating. His lymphatic malformation made swallowing extremely difficult, and he has had a feeding tube since he was 3 days old. Thanks to Noah's amazing occupational therapist, Noah has learned to eat and drink 100% orally in the past year and a half. It has been two months since we have used his g-tube. We tear up just watching him shovel food in his mouth! Noah's success is truly a miracle!

 

Because his condition is so rare, treatment is controversial. Our brilliant, experienced, yet humble ENT team at Children's has always said that the less we intervene with surgery, the better outcomes they have with lymphatic malformations. It is hard as a parent to just sit and wait, but we respect and trust our doctors at Seattle Children's, and they have always made us feel like we are part of the decision-making team. 

 

The first year of his life was a blur of occupational therapy appointments, expensive medical equipment at home, trips to the Children's E.R. and hospitalizations for airway risk, our long drives to Seattle, and lots of prayers! Even with great medical insurance and our middle-class income, by the end of 2009 our medical bills were overwhelming. In December, we hesitantly called Children's and applied for help from the Uncompensated Care Fund. To our surprise, and great relief, we were approved. Turns out the program is designed for families just like ours. Whatever insurance didn't cover, this generous fund picked up the rest of our co-pay. What a huge relief. We humbly accepted the help and fell to our knees in gratitude! We never have to hesitate to get him the care he needs just because we can't afford the co-pay.

 

Noah is still young and will receive care for his lymphatic malformation for many years to come. But now that we are back on our feet, it is our turn to give back and help families just like ours. Life can fall apart in so many ways, but the uncompensated care fund has made it so we have not fallen apart financially. We are eternally grateful for the care we receive at Seattle Children's and support from the uncompensated care fund during this storm in our life.

 

~ Andie, Noah’s Mother