Child DevelopmentParenting

Adri’s Story – Part 1: Birth & Diagnosis

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Adri's Story: Birth & Congenital Heart Defect Diagnosis

Adri’s journey has been a long and involved one so far, but a story worth sharing, and sharing properly, so I’ve broken it into multiple parts for easier digestion.

We welcomed our firstborn into the world on a freezing cold, snowy winters day – December 28th, 2008 at 4:04pm. It had been a difficult and miserable pregnancy with more vomiting then I had ever experienced in my entire life up until that point. We knew we were expecting a girl and she was estimated to join us on January 1st! Well our New Years Baby decided to come a wee bit earlier – I’m convinced it was due to my running out of medication over Christmas holidays when all the stores were closed. I threw up for 2 days straight and voila, there she was!

Adri’s Birth

I’ve been blessed with a super involved hubby, and that was evident right from the start when he caught our baby girl and cut the cord too. I got the briefest of skin to skin snuggle time to welcome our baby into the world before they gently took her from me. Something was wrong. Because the snuggle was so quick, and Scott was still cleaning up from his duties, we never did get that precious photo of mommy meeting baby for the first time (something I’ve never let him live down)! Instead, this is the first photo of our baby.

Adri's First Photo
Adri’s First Photo

The midwife and nurses were concerned. Adri (although at this point she was still unnamed) wasn’t quite crying like she should. Her skin wasn’t quite pink enough, and her oxygen levels weren’t where they should be. They suspected something was wrong with her lungs and whisked her away for a chest x-ray. I am so very thankful that I had never before witnessed a chest x-ray. Adri has now had many, and it is a horrific, but necessary ordeal and I’m glad the new mommy I was at the time was spared from knowing what her newborn was going through. The x-rays came back clear, so the next culprit was her heart.

We lived in Maple Ridge when Adri was born, and the hospital out there did not have the equipment necessary to perform a pediatric echocardiogram, so the next day – at just 24 hours old – I passed my sweet girl off to her very first babysitters, the Infant Transport Team that served BC Children’s Hospital. Scott and I stayed behind. To say that it was the hardest thing I had ever experienced would be a gross understatement. Because the hospital was “full”, they weren’t admitting her. She was going in through ER with the hope that once she was diagnosed, they wouldn’t be able to turn her away. We were warned however, that we might end up in Victoria, Seattle or Edmonton, there was no guarantee. Because she was going into ER, and they didn’t know when they would be able to perform the procedure, I was told to stay behind. I had just given birth, and sitting for hours or days in the ER was not an option for my poor stitched up body. Scott stayed with me as a massive snow and ice storm had swept in and there was no way I was having him travel those treacherous roads, in the middle of the night, especially given the sleep deprived state he was in. They promised to keep our baby safe, assured us they would call as soon as they had any news, and we would make the trip to Children’s first thing in the morning.

Congenital Heart Defect Diagnosis

True to their word, we got the call at midnight. It’s a congenital heart defect. Well several of them actually. Ones that could have, and should have been detected in utero. She had a Transposition of the Greater Arteries (TGA), which meant her aorta and pulmonary arteries were on backwards. Instead of oxygenated blood pumping from her lungs to her body, it was on a closed circuit from her lungs to her heart and back to her lungs. The oxygen deprived blood was on a separate closed circuit from her heart to her body and back to her heart. A child born with this defect and no other, often dies at birth or shortly after. Ironically, Adri was “blessed” with other defects. Defects that of themselves would not have been a blessing, but when viewed in light of the backwards arteries, meant that she was able to survive long enough to make it to surgery. These other defects were Atrial and Ventrical Septal Defects (ASD and VSD – extra holes in the heart) and a Patent Ductus Arteriosus (PDA – extra pathway between the pulmonary and aortic valves). What all these extra holes and pathways did was allow the oxygenated and unoxygenated blood to mix in Adri’s heart. It wasn’t as much oxygen as a healthy newborn would have, hence the colouring of the skin, low oxygen sats and lethargy, but it was enough to keep her alive.

Scott and I were numb. Even though we had a diagnosis, the future was so uncertain. We didn’t know what our baby’s quality of life would be – if she would be able to do things a typical child could do – or if she would even survive surgery. The staff told us to try to get some sleep, and I think I may have dozed off at some point, but I vividly remember a nurse quietly coming into our room about 4am, and laying out – along with our discharge papers – a tiny pink hat with the words “I was born at Ridge Meadows Hospital” on the front. It broke me. I did not have my baby with me to put the hat on. She was far away from the only 2 people in the world that she knew, no Mommy’s milk to nourish her, no warm arms, familiar scent or sounds to sooth her – surrounded by strange sights, sounds, people – probably so overwhelmed. For the first time in the almost 48 hours since she had been born I felt the full weight of reality crash down on me. Scott had sobbed the night before, when we received the diagnosis, but it was this little scrap of pink fabric that was my undoing. There would be no more sleep for either of us, so as soon as we were able to finalize my discharge, we headed out over the icy roads towards Children’s Hospital and our precious baby girl.

Read Adri’s Story – Part 2: Before Surgery here

19 Comments

  1. I’ve lived and heard and told the story so many times you’d think I would have gotten beyond it after 5 years but reading it in print in your words brings tears once more.
    Daddy

  2. Thank you for sharing your powerful and heartbreaking story. I’m so sorry this happened to you (and any family!), but I’m relieved that things worked out in the end. I’ve read parts 1-3 and am waiting for part 4.

    1. Thank you for reading. We were lucky to be surrounded with an incredible support team – I don’t think I would have had the strength without them!

  3. Oh my goodness, I can’t even imagine. I know how grateful I was for the amazing NICU care we received. I completely understood how the hat could have set you off – I remember something similar when I was discharged with my baby still in the NICU. Thank you for sharing your very powerful story.

    1. Thanks for commenting! Yes I am amazed at the strength of people who chose to do that day in and day out as their profession. I couldn’t do it!

  4. Oh mama. Crying at my desk right now. My daughter is also a 2008 baby. Knock on wood, we haven’t had any major medical concerns with her. I can’t imagine what you went through. Off to read the next part your story.

    1. Thanks for reading. I’m so happy to hear you had a happy, healthy 2008 baby! Our second was a breeze from delivery onwards and it’s amazing the difference in experience!

  5. As a perinatal RN it is always touching to read a story about a parents experience when the unexpected arises. How painful it must have been to have been separated from your newborn when all you probably wanted to do was do some skin to skin and kiss that sweet baby.

    1. Thank you for the amazing work that you do! We could not have been in better hands with the care we received at BCCH. I am in awe of anyone who can do that for a living – I wouldn’t survive!

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