This post is a guest post written by Heather for Congenital Heart Defects Week – February 7 -14, 2019. She wanted to share her story how it played it out living in Northern BC and needing to travel for care.
Many families are unable to receive the care they need in Northern British Columbia and need to travel to the lower mainland to see specialists and receive treatment and operations. This can be very stressful and we often feel alone in this, but you aren’t alone.
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A Story of Tricuspid Atresia in Northern BC
Our third daughter Britta was trouble for the ultrasound techs. Each time I’d go for a scan, I’d get a call back saying they couldn’t get good heart pictures because of her position. We tried one last time when I was 38 weeks pregnant. I remember joking with the tech about how silly it was to bother this late. I mean, what were the odds there was anything wrong?
Turns out the odds are 1 in 100 and Britta was the one. The c-section we had planned for the following Friday was canceled and instead we were sent on our first of three air ambulances rides to Vancouver. Britta was born late in the evening on April 2, 2018 at B.C. Women’s Hospital, in an emergency c-section following a sudden placental abruption. She has always done everything with dramatic flair.
There are a wide array of congenital heart defects. Usually you hear about holes in the heart – ventricular and atrial septal defects. But the heart is a complex little device. Valves can be malformed, blood vessels can connect in the wrong location or be the wrong size. Britta was diagnosed with tricuspid atresia. The tricuspid valve between her right atrium and right ventricle never formed and consequently her right ventricle never developed. She only has half a heart. Prior to the 1960s, her condition was 100% fatal.
Today there are three palliative surgeries to allow babies with TA to survive into adulthood.
We flew back to Prince George when Britta was 9 days old. The first seven months of her life were extremely stressful. We saw the pediatrician at the hospital every week and regularly checked her oxygen saturations. We monitored her colour and her energy level and her weight gain. In early June we had our first big dip in oxygen saturations and were quickly sent to B.C. Children’s Hospital. Britta had a catheter procedure to try and open her atrial septum to allow for blood mixing. During that procedure she crashed and was rushed to the OR for life saving surgery. She barely pulled through.
For the rest of the summer and fall we had to be ready to drop anything at a moment’s notice because her surgery left her with a shunt in place that was prone to twisting and clotting. We did end up with a twist. My husband was out of the country on business, so I had to leave my older two children with our amazing neighbours. I didn’t know what was wrong or how long we’d be gone. Fortunately, the repair was made via catheter and no open surgery was required.
Britta had her second open heart surgery, as scheduled on November 8. Her recovery was textbook and we sailed out of the hospital in three days. Since getting back home, we’ve been enjoying a lot more stability. It’s expected Britta will need her next surgery in about three years. And she won’t be cured or fixed. She is a cardiac patient for life. She is at high risk for stroke, heart failure, and liver complications. But in this moment, she is doing well.
When is CHD discovered?
Most CHD is not found during prenatally. Most are diagnosed in infancy, and some even later in childhood and adulthood. If you are expecting a baby, be sure to ask your care provider for a pulse oximetry test after birth. It’s a simple cuff on baby’s hand or foot that detects oxygen saturation. Britta’s defect would have been picked up very easily this way. It won’t catch all CHD, but it will catch lots.
For signs and symptoms in babies, think HEART.
H: Heart rate; too fast, or too slow (normal is 100-160bpm)
E: Energy; sleepy, quiet, might fall asleep while feeding
A: Appearance; Is baby pale, waxy, dusky, blue, or grey?
R: Respiration; Is baby breathing too fast or too slow? (normal is 40-60 breaths a minute)
T: Temperature; Is baby cold to touch, particularly in the hands and feet?
This guest post is written by Britta’s mother, Heather.