Two weeks ago today, we had our first ultrasound. September 19, 2012 is the day we found out that everything was not OK.
While an ultrasound uses sound vibrations to get an image of babies inside their mummies, these sound waves crashed into the depths of our lives and reverberated throughout the universe in a spiral until it came to a deafening halt on September 28. We’re now trying to pick through the rubble and aftershock.
For today’s entry, I am sharing the note that I wrote on facebook once we had a diagnosis for Henry, which was the Monday following our first ultrasound.
Mine and Tyler’s lives have changed drastically in the last week. It began in May, when we had the wonderful news that we were expecting a little one to grace our homes with joy sometime in late January. We eagerly anticipated our first ultrasound, which happened last week, on September 19. We had no idea anything had been awry during my pregnancy – no false contractions, bleeding, or anything else – just a regular, easy pregnancy to date that brought us a lot of joy.
During our first ultrasound, we were, at first, elated. It was our first time seeing our child. We found him to be the most beautiful little baby, and we were so proud. He was funny because he moved away from the ultrasound wand when the doctor pushed in a little harder to get a clearer picture of some part of his anatomy.
Unfortunately, this and the feelings of him kicking and wiggling from the inside will be our only memories of him.
The doctor informed us that our little boy’s limbs were really under-developed, and his skull was too large for what a typically growing baby at 20 weeks measures. So much so that they actually pushed my due date to the end of February. We were then handed over to St. Justine’s Hospital to see a genetic specialist, but we had a few days to wait before getting the phone call that would confirm our appointment.
For the next few days, I was a zombie. I cried nearly constantly, and only ate for the benefit of the baby whose diagnosis we had yet to learn. We had no idea what could be wrong, and tortured ourselves by Googling what he could possibly have. The doctor speculated that it could be thanatophoric dysplasia, or one of many forms of dwarfism. We prayed for any form of dwarfism, hoping that we’d be one of the lucky families that learns that everything was actually okay withour son – that he was just growing a little slowly and would need more time, or that it was because of me – sometimes, women with non-typically shaped uteruses show smaller babies who are actually growing healthy and strong. But this wasn’t the case.
I forced myself to think positively for a few days – what could it hurt? I was dismayed at the challenges our child would experience at being different, but anything was better than hearing a death sentence for our unborn child. But we were not so lucky.
Finally, our appointment to see the genetic and fetal bone-formation specialists at St. Justine Hospital came this past Monday. We sat around nervously waiting to hear if we could get a diagnosis so that we could either stop worrying, or, at absolute worst-case scenario, be faced with a tragically difficult decision.
Our ultrasound doctor – who as also our fetal bone growth specialist doctor, was simply fantastic. She said she would go piece by piece, organ by organ, and see if she would be able to let us know why we were there. Not long after investigating, she was able to definitively diagnose our son. It was the worst news we could possibly hear. She said that our son has osteogenesis imperfecta, type 2a. It was fatal, and she was very sorry.
His bones had not been growing properly because they kept breaking – even in the safest place for him to be – in my squishy womb. But we can’t even protect him from harm in there. Ater we left, four specialists met to go over the results of our ultrasound, and they unanimously ageed that he had this deadly disease, where bones don’t grow properly – the mineral foudation that makes bones rigid simply wasn’t there. His ribcage wasn’t growing in a way that would protect his lungs, and, because ears are made of bones that let us hear, he is also likely deaf. If we carried him to term, the birthing process would re-break every bone in his body, even with a gentle C-section, and he would then die of respiratory or heart failure. We wouldn’t even be able to hold him to comfort him when he cried.
We spent a good few minutes wailing inconsolably in the room, and will be every day, likely for the next few weeks, days and months. This was NOT what we wanted to hear. Not our baby. Not our sweet, little innocent perfect, beautiful baby, who we were so looking forward to raising, introducing to butterflies, music and reading. Who we were going to teach to walk, hear his first words, hear laughing and crying. Instead, we had an impossibly hard decision to make.
No words exist to truly express the deep and dark sorrow that we have been living with. One week ago, everything seemed to be fine. All of my blood and urine samples, and fetal heartrate were excellent. We were joyously waiting to meet our little one. Instead, we are preparing to say goodbye.
Thank you to everyone who has already shown us their love and support. We have kindly been asking to be left alone in our sorrow, and we very much thank you for respecting our wishes. This isn’t something we feel ready to discuss or explain.
At a later date, when we feel ready, we will hold a memorial service for our little Henry. We know that he will soon be with his Grandpa Richard and Grandma Arlene, and that we’ll all be together again someday.