Tetralogy of Fallot – Henry’s Diagnosis

I am a superstitious person. Not a, “don’t cross a black cat or walk under a ladder,” kind of superstitious, but more of a, “it’s my fault, because I jinxed it,” superstitous. My superstition started in grade school, from something as small as thinking I aced a test but spoke too confident and failed it, to interviewing for my first career out of college and not getting the job, to meeting my husband and being careful not to voice my feelings for a potential future. I never wanted to jinx it.

This superstition can often become consuming in monumental moments. When we went for the anatomy scan of our third child Henry, I was concentrating and praying so hard for this baby to not have Stickler Syndrome, that for a moment, I felt, that I brought on this other ailment by being naive to any other abnormalities that could be found on a scan. I was so focused on seeing the baby’s jawline (any hint of Pierre Robin Sequence?), and looking for any sign of a cleft palat, and asking the tech if they looked normal (they did), that I let my guard down and I stopped praying that everything else was ok. It didn’t occur to me that while we were so concerned about passing down SS, that this baby could, by chance, be a part of a whole other medical statistic that we had no history of or experience with. And there it was. Something was wrong with his heart. I jinxed it. 

The ultrasound tech was so pleasant and apologetic in explaining her findings, “I’m so sorry to have to tell you this,” she kept saying, and while my husband and I remained calm and fact focused, she carried it on almost too long, telling us she was going to step out to get a second opinion and Matt and I could, “have a cuddle.” She literally said that three times, and when she did leave, we just looked at each other and shook our heads. We weren’t going to “have a cuddle,”-the british version of “hug,”- until we knew what the hell this meant. We had experience in receiving frightening diagnosis’ of an infant, scheduling emergency surgeries, doing our research, finding support, and not wasting too much time worrying until we have done everything that’s medically available to “fix,” it. 

As sweet and compassionate as she was, this became a cultural differences moment. We are American ex-pats living in the UK. As americans who have a background in business, we both wanted the facts, we needed more information, we wanted to get to the point of what this meant for our baby’s future. We wanted her to stop talking already and leave to go find whomever she said was going to find to get a second opinion, have another look, or give an actual diagnosis before we got anywhere near emotional about this. Brits are different. They beat around the bush. They drag things out, leave things vague, and use pleasantries and passive aggressive manners instead of just getting to the point. I digress.

Photo courtesy of https://commons.wikimedia.org/wiki/User:LadyofHats

The Diagnosis

I always felt in my heart that I would be a mother of three boys. I used to joke that I felt that was my fate because of all the hearts I broke in my dating days and karma was going to get back at me. I never dreamt that one of my boys would be born with a broken heart of his own. We were booked in for an additional ultrasound that same day with a fetal medicine specialist. It would be hours later and our oldest son Dexter was with us so I sent Matt and Dex home while I did the ultrasound alone and received confirmation that this sweet baby had Tetralogy of Fallot. He was safe while in utero, but would require open heart surgery at some point within the first year of his life to fix the large hole (Venticular Septal Defect) and cut away muscle causing his pulmonary stenosis, with the possibility of widening the Pulmonary Artery. There’s only one person I know who has had open heart surgery: my cousin Ross, who also has TOF (completely a coincidence, as this is not genetic in our family). He’s a year younger than me and I was too young to remember much about the seriousness around his condition and his surgeries in the ’80’s, but my first thought was this: Ross is 34 now. He’s run the Chicago marathon three times. He played soccer, and wrestled, and has been athletic his whole life. He’s the life of the party, he has a happy-go-lucky attitude and he’s fun as hell. If that’s any indication of what our TOF-er can look forward to, than things are going to be alright.

Henry 4 Weeks. A photo I will always cherish as it is pre-OHS scar.

Stay Positive. Can it be fixed?

Let’s Fix it.

Everyone has their trials in life. Whether it’s financial hardship, or a troubled marriage, or difficulty conceiving, or addiction, or family strain. Everyone’s got something that they silently struggle with. Our children’s health is our trial. But it’s all about perspective and how you manage. Matt and I take the challenges that come our way head-on with a positive attitude. This is why we work. This is why we fit together so well from the start. That’s not to say we don’t take turns being upset, or breaking down, but that’s just it- we take turns. If one of us is down about it, or upset, the other knows to be the positive and uplifting. We are not “why me,” people. We are not, “prayers please, ” on social media people, we mostly keep things within our family circuit, and ask the question of, “is this fixable? The let’s fix it.” We focus on being positive, and although we are not the poster children for living a religious life, we still pray. I grew up catholic and I’ve turned to prayer in dark times throughout my life, and God has never let me down. I pray as hard as any God-fearing-catholic-raised mother would, and I’m 100% a believer that He has a plan. I mean, come ON, how else would you explain the fact that we were given three children that have inherited a rare genetic condition (Stickler Syndrome-from yours truly) AND then he throws in a completely unrelated Congenital Heart Defect on baby number three- whom, BTW, was completely and utterly a totally un-planned-immaculate-conception-style pregnancy? Dude’s got a plan. And Mary was definitely in on it (the OG of immaculate conception- if you’re not catholic, look it up.) He picked us to be the parents of these children. He picked these children to teach us how to be parents. He knows our strength as a couple, our ability to conquer fear as a father and mother, and knew if anyone can handle this, it’s us.

Baby Huck 5 months

Henry was born at 39w4d. He was a healthy weight of 8lb 3oz, and pinked up nicely (TOF babies can be born “blue,” and need to be rushed off for testing or emergency surgery.) He fed well from the start and we were able to take him home the next day. He has thrived and grown and has not had any blue spells that the fetal cardiologists warned us about. He is now six months old and you would never guess anything is wrong by looking at him. However, his heart still needs to be fixed, as this is not something one can live with past the age of three. He will go into open heart surgery in less than two weeks. We are anxious, and nervous, and positive, and hopeful. Most of all, we are ready to repair his little heart so we can be on the other side of TOF.

2 thoughts on “Tetralogy of Fallot – Henry’s Diagnosis

  1. Those boys have the greatest gift for having you two for parents . With your take charge attitudes, doing your homework on all things medically affecting your kids no obstacle stands in your way towards The best possible outcome . If I’ve said it 100 times I will say it 100 times more, You two are amazing parents and we couldn’t be prouder for how you have overcome each situation life has thrown at you.


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