Tell me about Tetralogy of Fallot and how it affected you.
November 11, 2011 5:40 AM   Subscribe

Our son couldn't wait another two or three weeks to come out of his mums tummy so he popped out on Tuesday morning. But he's had a rough first few days of life. There's numerous issues, the most serious of which is a heart defect (teratology of fallot). Tell us it's going to be OK, drawing on your experience with this to help reassure us.

After a seemingly fine first day of life, our son, Edison, was diagnosed with jaundice, then a possible infection (he's on an antibiotic drip to be sure) and finally a heart murmur, which eventually (today) was revealed by a cardiologist to be tetralogy of fallot (ToF). Now he's in intensive care, just as a precaution, apparently.

The jaundice appears to be on the mend and the infection should (hopefully) be gone by tomorrow. But its the ToF thing we're most worried about. Edison will need surgery in about six months and between the cardiologist and Dr. Google we're told there's a very good chance he'll be fine following the surgery, which is apparently pretty straight forward. Apparently on the scale of how bad ToF can be, his is somewhere in the middle. I'm sure they're right but with everything else going on, we're obviously both stressed and worried. I think hearing some personal stories from parents and people who have or have dealt with this condition might help reassure us right now.

Any advice or insight would be appreciated. Thanks in advance.
posted by Effigy2000 to Health & Fitness (19 answers total) 2 users marked this as a favorite
My dad is a cardiologist who specializes in patients with congenital heart defects that survive into adulthood. It's a growing specialty because people do that now. The common treatment for ToF is a Blalock-Taussig shunt, something common enough for that to become part of my family's dinner-table vocabulary. Though these patients do need regular followup and monitoring, many of them live entirely normal lives.

So your son probably isn't going to be much of an athlete, but there's a decent shot that other than some mild exercise intolerance and annual visits with his adult congenital heart disease specialist he's going to be fine. One of the biggest potential complications for patients with ACHD is pregnancy, which really isn't going to be an issue for your son.

A word about choosing a doctor though. While your son is still a child, just about any pediatric cardiologist will do fine, as heart defects are just about the only thing they do, but pediatrics really is a different kettle of fish from adult medicine. Once he starts hitting puberty, it really will be time to find a cardiologist who does ACHD. Here's a link to the Asia Pacific Society for Adult Congenital Heart Disease.

Also, you probably need to watch Something the Lord Made, a film about Alfred Blalock and Viven Thomas, the surgeon and surgical assistant who developed the procedure your son will likely receive in the next few months. My dad says its portrayal of both the state of medical science and the culture of the medical practice at the time are both excellent.
posted by valkyryn at 6:09 AM on November 11, 2011 [20 favorites]

A very close friend had his first child, a beautiful girl, four years ago, and she was swiftly diagnosed with a serious heart problem. Within the first three weeks of her tiny new life she underwent three major operations and a lot of prodding and pain. He was as stressed as it sounds like you are, and he said his instincts were all screaming, get her out of this hospital, all they are doing is hurting and traumatising her.

Well, it turns out babies can take all kinds of stuff in their stride, because four years later she is one of the most beautiful, loving and intelligent children I've ever met, and such a consistently happy one as well. I don't know if it helps, but if you're worrying that all this so early in her life will harm her, my (or rather my friend's) experience indicates it doesn't work that way.

She's facing a valve or heart transplant sometime over the next few years, but she couldn't be more healthy, brave, and ready to face it.
posted by greenish at 6:09 AM on November 11, 2011 [1 favorite]

Most kids with TOF have surgery and do very well. The surgery is considered "corrective" vs. "palliative" for many other types of heart defects. Luckily most with TOF can wait to have the surgery until they are out of the sensitive newborn stage and are better able to manage the operation.
posted by sulaine at 6:33 AM on November 11, 2011

I can't say anything about the science or what it's like to be a parent of a child with a heart defect, but I can offer this: my sister's boyfriend was born with a congenital defect which required serious surgery and aftercare. He's now 21 and, aside from some minimal scarring, completely and utterly fine. So fine, in fact, that earlier this year he hiked along part of the Great Wall of China (and raised over £1000) for the British Heart Foundation.
posted by fight or flight at 6:34 AM on November 11, 2011

This is my daughter in the first few days of her life. I'll spare you the details; it's enough to say even though I'm really proud of myself for keeping my back straight and my shit together that week, I'd rather gnaw my own leg off at the knee than have a week like that again. I don't think of myself as being much of a sissy but it turns out that if I just sit by myself and think about the first 48 hours of my daughter's life hard enough I get the shakes, then I start crying.

This is her again, at about a year old. Happy as can be; strong, a big girl for her age. She's smart, fearless and she's going to be taller than both mom and dad. This is from just the other day. Strong and beautiful, and getting a little bit more so every day.

Modern medicine is pretty incredible stuff. Keep your shit together, listen to your doctors, and be the anchor your wife and kid need you to be. You've got to dig pretty deep at times, boy howdy, but it's a good habit to work on I think you'll be proud you did.

That's all I've got, sorry. I think I've got something in my eye.
posted by mhoye at 6:42 AM on November 11, 2011 [23 favorites]

Our first little sausage came a few weeks early, emergency c-sec. That was 2.5 years ago and it seemed bad at the time. But the little fella is thriving.
I just checked Mrs. FM out of antenatal hospital - same thing - high BP, suspected (but annoyingly and thankfully unproven pre-clampsia). she's home now. Perhaps back to emergency in the next few days. Tis just life. Can't wait for second FM.
Between the 2 kids she has breast cancer and a mastectomy. That's the point I shat myself - pregnancy, early term or c-sec - that's easy.
My point is whatever you go through you can handle it. I know that doesnt help with the technicalities of the problem, but I hope it gives you strength.
posted by fatmouse at 7:08 AM on November 11, 2011 [1 favorite]

It is incredibly scary to go from having a healthy screaming infant to one that needs to have surgery. Our little guy was born on time, scoring high on the APGAR, everything. 24 hours later, he was in the NICU for transient tachnypnea of the newborn. It was terribly stressful. I had a hard time processing what I was being told since the last time I had seen the baby, he was screaming his head off for his dinner. How could he have a lung problem?

But, no sooner was he in the NICU then he was off the monitors and finishing his course of medication. We were able to take him home and he has had no further problems. Here he is now.

So, while I don't have any experience with ToF, I do know how scared you must be feeling and how helpless. But, I will say this. NICU nurses and doctors are some of the best people in the world. It takes a very special kind of person to provide such amazing care to such little people and they do it, consistently, day in and day out. So trust them and entrust your baby to them.

When Edison is older, you'll be able to tell him about what a scare he gave you when he was born and for that reason, he's not allowed to get his driver's license until he's 18.
posted by Leezie at 7:09 AM on November 11, 2011 [1 favorite]

My youngest had a shakey first couple of days and spent the first three and a half weeks in the hospital. She is a fine teenage girl now and is one of the most naturally funny people I know, very handy to have around.

One thing I would suggest, if you are not already doing it, is to keep notes on everything that is going on with the date and time. It is easy to lose track of things doctors and nurses are saying to you with the level of emotion and lack of sleep you are dealing with.

Congrats to you and your wife!
posted by readery at 7:14 AM on November 11, 2011

Preemies do require lots of care and love, but anymore things turn out fine in the end. Our daughter was almost 4 weeks early and the first couple of months were scary. She's now a wonderful young adult, getting straight A's at a very competitive school for gifted kids, active social life, etc. The only long-term effects we've experienced have been a problem where her eye's don't track together which means coming to terms with the idea that she probably will never be the concert harpist she wanted to be. I don't mean to belittle the seriousness of Edison's state, but medical technology has come a long way in the last 30 years.
You'll get through this. Give your spouse all the support you can, but also be willing to accept the support of other people. Be there for Edison, and some day you'll be able to tell him what his first months of life were like for the family.
posted by Runes at 7:30 AM on November 11, 2011

My youngest was a micro-preemie, born weighing 17 ounces. She spent the first 5 months of her life in the NICU and had to have open heart surgery to correct a heart valve problem.

We brought her home as a foster child at 5 months. Our biggest issue was keeping her warm and feeding her enough to she would gain weight. (If there's anything we Clarks can do well, it's put weight on children.) We adopted her before we knew how she would turn out. Her physicians scared away all the potential adoptive parents by talking about cerebral palsy and other preemie complications. Finally we just said enough, we'll take her.

It all worked out. She has some small health issues related to having immature bowels, but our little Olivia is eight years old now doing cartwheels everywhere and driving us crazy in all of the right ways.

Takeaway: It is a lot of work and sacrifice early on, but it gets better and you learn how to deal. You'll be glad for the effort!
posted by cross_impact at 7:54 AM on November 11, 2011 [3 favorites]

I know a young girl who was born with exactly that. She had some heart operations in her first months and years and it was hard for her parents. She's now about 9 years old and healthy and happy and bright and busy. When she was born the surgeon told her parents, "This is your first time, but we do this kind of thing all day every day." Be strong. It's going to be okay.
posted by ThatCanadianGirl at 8:26 AM on November 11, 2011 [3 favorites]

Please talk to the social worker at the hospital and let him/her know about your worries. They can hook you up with all kinds of community resources and supports. Helped my husband and I enormously with my son's early medical issues and our trauma from his birth.
posted by the young rope-rider at 8:39 AM on November 11, 2011 [3 favorites]

Oh and the way you get a social worker is to say to Edison's nurse "hey, my wife and I would like to speak to a social worker, please".

They are used to coming to the NICU and supporting NICU parents. Our baby wasn't in the NICU but all the handouts were designed for pretty much your exact situation.

Good luck and when you're feeling better I'd love to see a picture of your wonderful little guy.
posted by the young rope-rider at 8:55 AM on November 11, 2011

A friend of mine had a baby with this heart defect. I was really worried on her behalf. That baby is now a three-year-old, and doing just fine.
posted by BlueJae at 9:43 AM on November 11, 2011

Your cardiologist will do the best about giving you the facts specific to you child's care, and the range of expectations to be prepared for, but I can share this-

A hospital I once worked at once had a cardiac surgeon who specialized in ToF repairs and I saw those kids when they were in there teens and they were, apart from the surgeries they underwent and the followup they needed from their cardiologist, normal, healthy kids. One girl was in 8th grade, liked watching animal shows on discovery, was embarrassed to talk about being sick, too cool to talk to the med student, texting while anyone talked to her, obsessed with her ipod.... or in other terms, pretty much like any other 14 year girl.
posted by midmarch snowman at 10:05 AM on November 11, 2011

Oh, and I strongly, strongly support getting to know the social worker well. We can tell you stories of kids who had the repair and lived full lives, your doctor can tell you the science behind the correction and the survival states, but I don't know a single parent that's had to sit in the waiting room for surgeries, appointments and studies without needing support from everyone who offers it. Parents holding their kids after surgery tend to cry in public more than other parents otherwise would. It's okay. Get people around you who you can confide in. You're going to be stressed and worried. You're probably going to yell at people who you care about and did nothing wrong - Let the people around you know that you love them and value their support and they'll understand what you're going through.

Talk to parents of ToF children in Queensland personally, like meet them and get their numbers. In four years you're probably going to be talking to a pre-school teacher who's scared to have a ToF kid in their class, and you'll have to reassure her just because your son had heart surgery doesn't mean he has to be sedentary. Or something else will happen, I've never been through this so I don't know, but You're going to want to call a friend you've met through a ToF support group who has been through this.
posted by midmarch snowman at 10:27 AM on November 11, 2011

I don't have a personal story to tell you about ToF, but I work with several cardiologists who do the surgery on infants and see adult patients who had the surgery. People do live with it, and have full lives. It's not as limiting as you might think. Want to know of someone famous who has/had ToF? Professional snowboarder and Olympian Shaun White.
posted by southpaw at 2:00 PM on November 11, 2011

I have had both a niece and a nephew (neither one are blood relations, meaning genetics didn't play a part) born with ToF. Both of them had surgery around the six month mark. My niece is 23 and my nephew is 11. Both are healthy and happy individuals.
posted by deborah at 6:14 PM on November 11, 2011

Edison is doing better now. He's still in ICU but the infection is gone and it seems the jaundice will be completely gone soon. Obviously the heart issue is still around but its something that can and will be fixed.

Thank you everyone for sharing your stories and advice. It has helped put our minds (somewhat) more at ease.
posted by Effigy2000 at 4:03 AM on November 12, 2011 [3 favorites]

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