Oaklee's Story

Q: What condition was your child born with?:
A:Turners Syndrome & Congenital Pulmonary Airway Malformation

Q: What were some of the biggest challenges that come with this diagnosis?

A: When we received the news we were having a daughter we were thrilled. However upon further analysis we also discovered she was going to be born with Monosomy X also known Turners Syndrome. It was extremely difficult to accept due to Turners babies only having a 2% chance of surviving to birth. Not only does our daughter have Turners but she also has a rare lung malformation called a CPAM. With these two diagnosis we were encouraged to abort our daughter and try again to become pregnant. We chose to continue the pregnancy even with having been told even if Oaklee would make it to birth she would pass shortly after or be stillborn. We never lost faith! We traveled to the East Coast to seek the best possible outcome. I received a few rounds of injections to help shrink the massive lung mass in Oaks chest. After a month at the Children’s hospital in Philadelphia we learned the mass had shrunk and Oaklee had viable lung tissue! Our biggest challenge was not knowing what was going to come, if our daughter would be born alive or if we ultimately have to accept the death of our precious girl. Another huge challenge was having to navigate life around this diagnoses and already having 8 other children at home between my fiancé & I. I had multiple ongoing appointments each week for the entirety of my pregnancy.

Q:How has this diagnosis impacted you and your child's day-to-day life?

A: Oaks father and I have become so much stronger. We’ve learned that even with fear and uncertainty there is beauty in the face of darkness. We’ve become closer in our faith and even became baptized together in front of our church congregation while sweet Oaklee was still in utero. With Oaks lung issues we have to be careful and precautionary about even the common cold and how it could affect us, our family and ultimately our daughters life. We are so thankful she’s here with us and has continued to defy all the odds!

Q:What do you wish others would know about your child's medical condition?

A: It is not a death sentence. It’s just made our daughter so much more special than ever before. That even though she’s different she’s created with such purpose and love.

In what ways has your child inspired you or others?: Because of Oaklee's lung mass size local doctors were reluctant to treat it. We never gave up and because we did so doctors here now know that the treatment I received while in Philadelphia works and will save babies lives here in the Omaha area/ Midwest. Our story will help mothers facing a fatal diagnosis to not let go of hope.

A NOTE FROM MOM:

Oak is on her own time. So much so she came almost 9 weeks early just before Christmas. She wanted to give us the ultimate gift, the gift of life!! While in the NICU Oakie girl enjoyed pulling out her feeding tube. :)

Turner’s individuals are referred to as butterflies and our girl is surely a beautiful one.