Sometimes, your family is that 1 in 2500 chance, and you get to go through something you would have never imagined. This is our family and our Tetralogy of Fallot story.
A story of how our ordinary family entered into a whole new world we never knew existed, went through moments we thought would never happen, and saw the miracles God performs every single day. And how this tetralogy of fallot story would change the course of our lives for the better.
I wish I had some stories to read when we were just starting our journey, and that’s why I am sharing this with all of you. So grab a hot drink, sit down, and read on!
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How Our Tetralogy of Fallot Story Started
Tetralogy of Fallot is usually already diagnosed in the womb, however, we didn’t find out about it until my daughter was 7 weeks old.
At my 6-week checkup with my midwife, she heard what sounded like a heart murmur. We were sent to a local pediatrician, and from them on to the BC Children’s Hospital in British Columbia, Canada.
After an echocardiogram (ultrasound of the heart), and an electrocardiogram (measuring heartbeats), we got the news.
My daughter had Tetralogy of Fallot with a Right Sided Aortic Arch. A serious condition that would need at least 1 open heart surgery.
I was shocked and confused, as she seemed so healthy and vigorous! But soon we learned she was one of the “good” cases, and most babies with this suffer a lot more than her.
From then on, we had to get regular check-ups, pediatric growth visits every 2 weeks, and lots of phone calls, emails, and back and forth questions.
I have to say, I felt very well taken care of and all my questions were answered! This was one of the only things that actually made this time in life bearable.
What is Tetralogy of Fallot?
From the words of a mother, and to my knowledge, Tetralogy of Fallot is a congenital (meaning from birth) heart defect that consists of 4 different defects.
The first is the narrowing of the pulmonary valve. This artery is responsible from transporting blood from the heart to the lungs. If this is too narrow, less blood can reach the lungs, meaning less blood is oxygenated.
The second defect is a hole between the bottom two chambers. Meaning the oxygenated and deoxygenated blood mixes, something that’s not supposed to happen.
Because of the above two defects, the right side of the heart has to work harder to pump blood. Therefore, the wall of the heart gets a lot thicker and stronger than the other side.
The last characteristic is an overriding aorta. Meaning the artery that brings blood to the body is too far in the middle of the heart, where it should be more to the left.
My daughter also has a right sided aortic arch. Meaning instead of her aortic arch going around the left side of heart and down to her body, it goes around the right side of the heart.
Most babies and children with tetralogy of fallot will have something called “blue spells” or “tet spells”. This means their body is getting too little of the oxygenated blood and they will develop a blue or purplish color to the skin, lips, and nails. These spells may also make a baby go completely blue, very fussy and irritable, and even pass out.
We were closely monitored, asked a lot of questions, and my daughter was taken very well off. Thank the Lord, she was a “red tet” baby, meaning, she never had any big “blue spells”.
However, sleeping at night was impossible for me, as I was always worried she would have her first spell. My owlet monitor was my saving grace. It alarmed me when her oxygen levels or heart rate would be too low and I could wake up and help her.
The date for the surgery was set, and then it was just a lot of appointments, waiting, and a whole lot of praying.
The Day of the Surgery
We arrived in the morning at 6 am and were brought to the pre-op center. Here they took her vitals, we dressed her in a little gown, and shortly before 8 we said our goodbyes.
We were able to sit in a little waiting room while her surgery was done.
They told us she would take at least 4-6 hours; however, we had an AMAZING surgeon who was able to get her in and out in 3 hours! He came and gave us the news that everything went better than they thought, and she will be in the Pediatric Intensive Care Unit shortly.
It took them a while to get her set up, but then we were able to see her. She was laying on a bed, so tiny compared to the 10 big machines around her. She was hooked up to so many different monitors and machines. Honestly, without all the prayers and my trust in the Lord I would’ve broken down right then and there.
My daughter was watched 24/7 for the next 2 days, and then we were moved to the normal pediatric unit. She had some more bleeding than normal, so we had to stay for a few days. But a week later from the surgery we got to go home.
When we were home, she recovered amazingly quickly. I thought she would be laying and sleeping for 2 weeks, not playing and being herself for about a few months. But after 4 days she smiled, on day 6 she laughed and played like normal, and by day 10 she was off all meds and back to her regular old self again.
There was only a few things we couldn’t do. Like pick her up by her arms as that could hurt her (as they had to seperate her rib cage during surgery), give her a bath for a few weeks, and in general we were advised to try and keep her as calm as possible so she can make a quick recovery.
To Moms Going Through This
If you are going through this with your own child, just know the hard times are temporary, and things will get better. The technology and doctors nowadays are amazing, and they will take care of your child so well.
While at first, having a child diagnosed with a congenital heart defect can seem life altering, and like the worst nightmare. But pretty soon your child will grow up and you will start forgetting they even have a heart defect. Trust me, even a few months later I never even think about what we went through unless someone asks or I see her scar during changing clothes.
I know you may be reading this and think, “how could I forget something so huge?”, but the truth is, you do. I thought the exact same thing when I spent days crying about her diagnosis, wondering if she will ever be able to play sports and have her own children. But now, months after her surgery, it seems like a distant memory.
And while we still have regular check-ups and the thought of something going wrong is always in the back of your mind, you find yourself living your normal life again.
Nobody would ever guess that my very vibrant, energetic, and smart daughter went through an open heart surgery at 6 months old. She even started sitting and crawling before any of my other children. And this will most likely be the case for you as well.
So hang in there momma, your family will get through this. And soon, you will have your own tetralogy of fallot story to write.
If you need someone to talk to, we do offer 1-1 sessions where you can talk to myself. I went through this, and know EXACTLY how you feel. I’m an open ear and will be waiting for your message.
Until next time,