Henry’s Future with Tetralogy of Fallot

Henry arrived after an easy pregnancy and smooth delivery. Soon after his birth one of his nurses casually mentioned that she heard a heart murmur. I convinced myself it was just a benign murmur, something that would fix itself or just have to be monitored because Henry was doing so well.

The hospital pediatrician referred us to Cincinnati Children’s Heart Institute, and on Henry’s fourth day of life we found ourselves in the waiting room. As our cardiologist, Dr. Madueme, gently told us Henry’s echocardiogram showed that he had tetralogy of Fallot, I burst into tears.

I knew immediately this diagnosis meant open heart surgery on our baby. Tetralogy of Fallot is a congenital heart defect comprised of four known defects that typically occur together. These include a ventricular septal defect (VSD, or hole in the heart), pulmonary valve stenosis (narrowing of the pulmonary valve), overriding aorta, and right ventricular hypertrophy (thickening of the walls of the right ventricle).

Tetralogy of Fallot requires an open heart surgical repair for survival. The cause is unknown, and we will probably never know why Henry’s cells danced and divided their own way to form his special heart.

The next weeks were filled with so many questions and fears. As time went on, and Henry did well, our fears changed from, “is he going to have a health crisis at home?” to instead focusing on the anticipation of surgery. Henry had his surgical repair on November 17 with Dr. Tweddell and a wonderful OR team. He had a relatively smooth surgery and post-operative course, and we were back home with him quickly.

The incredible team members in the Heart Institute ushered us through this part of our journey with such compassion and care.  I will never forget driving home from the hospital on the day of discharge, looking back at Henry in the backseat and then over at my husband in disbelief as we asked ourselves, “Are we really on this side of things?”

It is amazing how quickly our focus was able to change back to looking toward the future. For six months we had lived solidly in the moment, trying to enjoy our time with Henry and not rush the weeks by as we waited for surgery. Since the day he was diagnosed, we had been reassured over and over again that after his repair he could lead a relatively normal life. Those words were certainly comforting, but it was hard to focus on them when the anxiety over his surgery was hanging over us.

We expect one more procedure to repair his heart when he is a teenager, but we are hopeful it will be a less invasive procedure by that point. He will have to be followed by a congenital heart specialist for his entire life. We’ve been told that we can expect that he will have a normal life expectancy and be able to do all of the things one dreams of for their children.

Henry is now 10 months old. Surgery was 5 months ago. Our current focus is helping Henry achieve the developmental milestones he hasn’t yet achieved due to having decreased energy earlier in infancy and from the effects of his surgery.

Despite his eventful first year of life, he is doing so great! He is happy and social, loves his brother, loves to eat, and greets everyone he meets with enthusiasm and a smile. I put him to bed every night and pick him up every morning whispering a thank you for the gift of his mended heart. We are emerging from this past year overwhelmingly grateful for the care Henry has received and for the support we have been handed from our friends and family.

So what is life going to be like now? We have hopes for as much normalcy as possible. We are already joking that, based on Henry’s developing personality, it is unlikely that he is going to be our cautious child. We expect him to pursue adventure headfirst with a curious nature. I’m sure this will cause me years of anxiety, but at the end of the day, I know I am going to go to sleep still whispering thanks that Henry is able to live any kind of life he should choose.

That is our miracle – that choice is what our cardiologist, surgeon, and the team in the Heart Institute have given our Henry. We are forever thankful that Henry has the option to choose his path, to pursue any adventure, and to live his life as big as he could possibly dream. Hope and gratitude carried us through this past year, and it is with hope and gratitude that we look toward Henry’s future.

Learn more about our Heart Institute by calling 513-636-4432 or requesting more information here.
Laura Kohus

About the Author: Laura Kohus

Laura is a pediatric occupational therapist at Cincinnati Children's. She is a Xavier University graduate, has lived in Cincinnati for 14 years, and been a Children's employee for 9 years. She shares her life with her wonderful husband, Matthew, and their sons, William and Henry. She blogs about Henry's Heart at www.tofmama.tumblr.com.

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Comments

  1. Tori April 22, 17:53
    God bless little Henry. I was born with TOF and I had my surgery at 11 months old. I'm almost 21 now and I'm finishing my junior year of college. Having TOF has not always been easy, but I am so thankful for the amazing cardiologist at Children's.
  2. Amaree April 22, 21:17
    My son was born 4 years ago with ToF. We immediately knew something was wrong when they cut the umbilical, and he has a balloon valvuloplasty at 3 days and then his repair at 2 1/2 months. Medical technology is so amazing! A baby that even 50 years ago or less had no chance of living past a couple of hours is now a spunky, fun 4 yo, with years of being a "normal" kid ahead of him! Many blessings on your heart journey! These babies are such blessings!!
  3. Nicolle April 24, 01:20
    Loved reading your story! It is very familiar to me. I experienced the nurse casually mentioning hearing a murmur after an uneventful pregnancy. We found out about 4 hrs later that our son had ToF. Hearing your emotions and your experience helps me to know that other moms have gone through the same emotions as I have. So thankful for wonderful surgeons and we are also praying often for those developing the future procedures! Hoping that our little guy won't need to go through such invasive surgery again! Thanks for sharing!
  4. Janco April 30, 09:07
    My name is Janco Vorster and I am 45 years old. I live in Bloemfontein South Africa. I was born with a congenital heart defect (CHD) namely Tetralogy of Fallot (TOF)in 1971. I was only operated on when I was 5 (in today's standards very late), but the operation was a success. I have had issues with atrial fibrillation through the years, and I have a story to tell. This I do on my Blog: http://www.myafibheart.com/blog/ The TOF has been a sort of "blessing" for me, because I think I value life, and every heart beat. Janco www.myafibheart.com
  5. Dominique June 28, 13:05
    Thanks for sharing Henry's story. I'm 30 weeks pregnant and recently found out that my baby has TOF. I'm worried sick. I've been crying since I found out but hearing your story has put my heart at ease. Hopefully my baby and I will be as strong as you'll. I'm going to continue to pray on it. Thank you so much! Blessings to you and your family
  6. Audra May 02, 22:09
    Your story is the exact story of my now 6 year old boy. He's hapoy, healthy, and wild as can be. He loves his scar and embraces his Iife as a heart warrior. It gets easier and believe or not, almost 7 years later, there are days I forget he was born with TOF.
  7. Monica May 03, 17:49
    I wish you the best. I too was born with Tetrology of Fallot. I had the surgery only when I was 8 years old back in 1970 by Dr. Cooley. I am 54 today. I have lived a normal active life. I have a checkup once a year. I will need a heart valve replacement when I get older, but that is for the future. I had only one surgery for it.
  8. Annie May 04, 08:16
    My brother had the same condition years ago. His name was Joey. After his death my parents agreed to an autopsy to better further the doctors knowledge regarding the initial incision. I'm happy to see this knowledge is helping kids like yours.
  9. lisa May 12, 08:44
    My brother was born with TOF in 1968. So happy to see how technology has helped children like yours. Would love to send a toy for your son.