Zachary was born to his mom Ashley one year ago. They live in Ft. Lauderdale and were visiting Grandpa in New York 2 weeks ago when Zach stopped breathing. His grandpa gave some rescue breaths and called EMS. In the hospital they found that in addition to his small weight and developemental delay, he was having seizures as the cause of his apneic spells. They also noticed some other physical characteristics that go along with the diagnosis of Tay Sach‘s disease. It is a congenital problem in which an enzyme is missing and the baby will build up toxins that eventually cause them to go deaf, blind and not move and ends up being fatal by 3-4 years old. The mom and family wanted confirmation so a blood sample was also sent to Mayo Clinic.
After Zach was stabilized, he was still in the ICU at New York Presbyterian hospital because he was unable to ingest formula without having trouble breathing. Grace on Wings were contacted to get Ashley and baby Zach home because his Florida medicaid would not help with the transport costs. The hospital was able to make the donation needed and we flew out to get baby Zach. I didn’t know what to expect with a baby with a congenital condition and was surprised to find Zach with big brown beautiful eyes, with superlong eyelashes and a cooing/happy baby. He had very little tone and at one year old couldn’t hold his head up and didn’t cry when upset but just made the face of crying.
During flight his mom asked for a pacifier and all I had was a tootsie pop to comfort him-wow how cute that was! After a long flight including refueling, we finally were flying over Florida when Zach’s heart began to slow. Ashley-who had been exhausted had finally fell asleep. I began to stimulate him and his heart rate would return to normal, but as he would fall back asleep it would slow just on the borderline of needing medication. We arrived to Peds ICU at Joe Dimaggio Children’s hospital and excited family was there to greet us. We tucked him in and kissed him goodbye.
Next day we were delayed to fly out from the weather and I reflected as we flew up toward the heavens, the gray thick clouds gave way to beautiful clear blue skys. People from the ground could see the dark depressing cloudy gray skies and from above we could see the same clouds-big white puffy from above with sunshine and blue skies. I wonder what God’s reason for this tragic condition of baby Zach was and if the dark gray diagnosis may have another white puffy blue-sky side. We pray for strength for Ashley and his family.
Thanks to great flying by Hal and Rusty and great care by Medic Adam.
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