Help Us Get Through This Hard Time
Meet Michael Andrew.
Michael is a real life one in a million, no make that on in a billion, medical anomaly. Michael was born November 4, 2021. Against all odds, he just celebrated 2 months of life on January 4th. While most parents of a newborn are celebrating milestones life a first smile or holding their head up, Michael’s celebrations are quite different. Each week he is with us is a new celebration.
Never in a million years would I have thought I would be sharing something so difficult and personal as Michael’s story.
Steven and I married in March of 2021, like any newly married couple, we were ecstatic that we would be welcoming a little bundle of joy at the end of the year. That excitement soon turned to concern as we learned that he had some complications.
At a routine sonogram in June, we learned Michael had some development issues. Concerning for sure, but not anything that some modern medicine, medical procedures and a skilled surgeon or to couldn’t help rectify and give Michael a great quality of life. Things like clubbed feet, heterotaxy (stomach on the wrong side of his body), possible tumor on his heart.
We quickly went from a routine pregnancy to high risk with a slew of doctors, specialist and more tests. As each test progressed, the news became more concerning. Test indicated Michael had markers for a syndrome of some sort, but doctor’s could not tell us exactly what. The further the pregnancy advanced, the more complicated his development became, of course, nothing could be confirmed for sure what we were dealing with until his arrival.
On November 4, Michael arrived. An answer to prayers, he was able to breathe on his own! We had been prepared to expect he would be taken quickly to Children’s hospital in Dallas for his first of many procedures. As doctor’s evaluated Michael and ran test after test; the results continued to come back worse than we ever could have expected.
In addition to his heterotaxy and clubbed feet, Michael had a single ventricle heart and craniosynostosis(skull fused before his brain was fully formed). All of which combined, were caused by a genetic syndrome called Carpenter’s Syndrome. In all the various medical journals, the only other case even remotely close his doctors could only locate was of a boy born with both single ventricle and craniosynostosis (at one year of age, he had major mental deficits.)
The combination of heterotaxy, craniosyostosis and single ventricle heart made Michael a one in a billion baby. One, sadly that the best surgeons in the US had to decline operating on. We were devastated as hospital after hospital turned down Michael’s case.
One November 22, at 2 ½ weeks of age, we brought Michael home from the hospital on Hospice/Comfort Care. Michael would no longer be a candidate for medications or procedures to extend his life but instead would receive oxygen and pain medication to keep him comfortable. In time, the single valve in his heart will close and he will cross the rainbow bridge. Doctor’s are not able to tell us whether this will be weeks or months – we are just thankful for every moment we have with Michael.
Michael requires care and observation 24 hours a day.
I have hesitated setting up Go Fund Me request for a while. I don’t like to ask for help and I find it especially difficult to ask for financial assistance. More and more people are asking how to help or what they can do for us. After quite a lot of thought and consideration, this is genuinely one way that can have the most impact and allow us to keep our focus where it belongs, on Michael.
Anything contributed is greatly appreciated and will go toward funeral expenses, medical bills and helping with living expenses while I am unable to work caring for Michael. If you are not able to contribute financially, we completely understand and appreciate prayers, positive thoughts, and sharing this wide and far. It genuinely takes a village and we are thankful to our village helping us on this unimaginable journey we are on.
Again, thank you for reading about Michael, we appreciate you.