Additional Needs

Diagnosis Day

Posted by Brittney Baumgartner on 25th October 2018 Additional Needs, Advice & Support, Disabilities

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The day they take their first steps, their first words, first day of school... There are an abundance of days that just stick in our memory for us to cherish for years and years.

What about those days though, that we wish we could shove far back in our minds that we don’t ever have to relive or remember them again? As awful as it sounds, I have one of those days.

Our diagnosis day. Granted, there are families out there that would give anything for a diagnosis, an answer. But for us, it was a day I will never forget.

It all started when our second trimester blood screening came back abnormal for our alpha feta protein levels. This suggested the possibility of a neural tube defect, spina bifida to be specific. Right around the time that we found out we were having a boy, we get the shocking news that our son may come with a lifelong diagnosis.

A diagnosis that left his lower spine open, failing to fully fuse together in the first month of foetal development. A diagnosis that meant his spine and all of it precious nerves were open to physical trauma since those very first moments of pregnancy.

Of course, having our son here now with us four years of age, all this sorrow we felt seems insane. But it is the truth.

No one receives a diagnosis for their unborn child and leaves that doctor’s office to celebrate. They leave in tears, fear, and this unknowingness of what the future holds. They hear the textbook definition of this ‘said diagnosis’ and are always given the worst-case scenario so that the doctors cover all possibilities.

Of course, this is not to go on and say that all doctors won't give hope, because we found ourselves blessed with a high-risk doctor who pulled out his phone and showed us pictures of other children with the same diagnosis smiling and living life.

Our diagnosis day was just a very trying time in our lives, unable to imagine how we’d care for this medically fragile child when we knew not even what it was like to have a new born yet.

But with grief, came support.

From other families who went through what we were currently going through, they reached out and showed us actual physical proof that although it would be hard, it was darn worth it!  Now, my child is amongst the smiling pictures that are shown to future parents when they need that light, that hope.