CHD Awareness Week – February 7-14

This post is about something near and dear to my “heart”: Congenital Heart Defect Awareness Week (February 7 – 14, 2011). My daughter Avery was born a month early on Christmas Day of 2008. Since she was breech, and my epidurals did not take, I awoke much later from sedation to find out that something was “wrong” with my daughter. In the first of a few posts this week, I will share my story from the diagnosis to her time in the NICU. From there I will detail her post-operative care in the Alberta Children’s Hospital, her release exactly one month after her birth as well as her current challenges and future prospects. I hope that in personalizing a CHD (1 in 100 babies is born with a congenital heart defect and it is the leading cause of death in children under one year of age) it will aid in understanding this birth defect as well as the process of care in our Alberta hospital system.

Diagnosing Avery:

I was out for hours as result of the anaesthesia (I have low blood pressure so that’s my “normal”) so my husband spent the first few hours cuddling with Avery all alone. While she had excellent initial Apgar scores and was quite tranquil (unlike a lot of the other babies that night!), at about the third hour, my husband then noticed that Avery’s breathing seemed a little laboured/congested. The nurses also determined that she was starting to turn blue so they then did a reassessment where they found her to have low oxygen levels. Initially, they placed her in an oxygen tent which had little effect.  Then, and since she was slightly premature, the nurses gave her a nitrogen blast (in hopes of opening up the alveoli to boost her levels). Given that neither of these two treatments mollified the situation, it pointed to a cardiac versus a respiratory issue. The residents then performed an echocardiogram which proved that Avery had transposition of the great arteries. In this situation, the pulmonary arteries and the aorta are physiologically reversed. As shown in the image below, the oxygen-poor blood that comes back from the veins merely travels in a circle through the heart and never heads to the lungs to get re-oxygenated. Without repair, this defect is always fatal (in most cases, 95% of infants who do not have surgical intervention die before their first birthday).

Treatment Begins:

Calgary and Edmonton have some excellent pediatric cardiologists (particularly in the area of catheter procedures). We were at the Rockyview  so both she and I were prepped for transfer to the Foothills (since it is all closely entwined with the Children’s Hospital and University training programs). Since I was still drifting in and out of consciousness, I found it hard to concentrate on what I was being told early on. It was at this time I first saw Avery…strapped to a full stretcher and with any number of machines connected to her, I turned to mush.

After arriving at the Foothills and being prepped, and at a mere eight hours old, Avery had her first surgery…a catheter procedure called a balloon atrial septostomy. Going in through the umbilicus, a catheter guides a balloon to the foramen ovale. That ovale is a hole in the heart that allows for blood mixing while an infant is in utero. Once a baby is born, the hole closes since, in a normal heart, blood mixing is no longer needed. As a way to keep Avery’s oxygen saturation levels high enough until she could have open heart surgery, the pediatric cardiologists inserted a balloon in that hole to keep it open and allow for some mixing of the oxygen-rich and oxygen-poor blood. The surgery lasted about ninety minutes and improved Avery’s oxygen saturation to 85%. Overnight, she recovers well, is stabilized and then prepped for transport.

Winging it to Edmonton…

Due to our vast geography and relatively small population, health specialities are regionalized (in an effort to centralize expertise and control expenditures). As such all cardiac pediatric cases are dealt with in Edmonton at the Stollery Children’s Hospital. As such, you could see patients in the NICU from as far east as northeast Ontario, as far west as the interior of BC and also from most parts of the Yukon, Nunavut and Northwest Territories. So on the morning immediately after Avery’s birth and first surgery, she was prepped for transport. Now I knew about STARS, but I did not know about the jets they use to do inter-hospital transfers! There were four to six attendants with Avery to monitor all her machines and ensure her respiratory system would handle the changes in pressure as a result of the flight. They just amazed me with their knowledge and reassurance.

I had been up most of the night (walking the halls…oh the joy of a c-section!) but finally, in the hour before she left, I got to talk to her, hold her hand for the first time and generally confer with all the NICU doctors and nurses on her condition, transport and stabilization once she was brought to Edmonton. And then off she went with a resignation on my part and an amped up desire to get out of the hospital and make the three hour drive to be at her bedside.

Next time: Getting to Edmonton, dealing with the travails of a busy NICU and open heart surgery!

Allison mixes up her day with mothering, working and crafting. She has three wild jackals (also known as children): Tristan who is seven, Charlotte who is five and Avery who just turned two!  She blogs at Stampin’ When I Can.


5 thoughts on “CHD Awareness Week – February 7-14

  1. Awww…I wish I knew you were doing these posts!! Our road with Hannah has been very different…we were in the States for her first 2 surgeries, and I knew about her heart at my 20 week ultrasound. It would have been fun to compare the two situations.
    I look forward to hearing the rest of Avery’s heart story, and Happy CHD Week to all of you!!!

  2. Hi Allison,
    My name is Shelly I am the founder of Little Moments Therapeutic Photography Foundation. We are a non profit foundaton in Alberta dedicated to provide good quality photos of children of cancer and other life altering illnesses . What a heart wrenching informative story of your little Avery. I was wondering if you would allow Little Moments foundation the pleasure of capturing some moments through photo for you and retelling your story. I have Photographers in Edmonton and Calgary areas and expanding every day. Thank you for sharing you story this Congenital Heart Defect Awareness Week. Warm Blankets of Healing 😀

    Shelly Jaques

  3. Pingback: CHD Awareness Week – Avery’s Story Continues | Kids in Cowtown

  4. Pingback: Month in review – February | Kids in Cowtown

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