Tetralogy of Fallot – Our Story

I became pregnant with Gabrielle Sofia at the end of February. She was due November 27th. Because she was measuring quite small, I had routine ultra-sounds every second week in November to track her growth. On November 30th, we went in for one of these routine ultra-sounds and the technician detected a hole between the left and right ventricles of the heart. This was probably my 5th or 6th ultra-sound but it was the first one that anyone had noticed anything abnormal in the heart.

A couple days later, we had an appointment with the pediatric cardiologist, Dr. Sinclair, and he confirmed that the baby had Tetralogy of Fallot. This is a condition where there are 4 problems with the heart. The heart has a defect where the body pumps oxygenated and de-oxygenated blood back through the body. This causes babies to have “tet spells” or blue spells where they go blue as they lose the oxygen saturation levels in their blood. We were told that there would be a repairative surgery when she was 4-8 months old.

There was a chance that she would have to have surgery immediately after birth, depending on how she was breathing. This surgery would be a shunt to help her get more blood to her lungs to oxygenate the blood better.

She did not have to have this surgery at birth. Gabrielle Sofia was born on December 9th, 2010. When she was 4 weeks old, we went for a routine check up with the cardiologist to check her oxygen saturation levels. Most people sit at 99-100% saturation. Usually she sat at 92% saturation, but they were willing to have her go as low as 80% before they would be concerned. On January 5th, she was all over the map on the routine check up. She went down as low as 30%, though she also went as high as 94%. The cardiologist decided it was time to get her a shunt.

A few days later, we were in Vancouver preparing for heart surgery. Gabrielle had her heart surgery where they installed a BT Shunt on January 11th. Initially she seemed to recover very well. We saw in her in the Children’s Hospital ICU that evening and she only had a few IV’s and nose prongs, though we’d been warned she may be on a breathing machine and have a catheter and a tube into her stomach. We were very pleased. The next day she was eating and we were transferred up to the regular ward and out of ICU. The docs were making promises that we could go home the very next day, 2 days after heart surgery.

On January 12th, at 9pm, we saw the first signs of complication from the surgery. In the next couple hours, Gabrielle went from looking like quite a healthy recovering little baby to dying as her heart failed. They rushed her back down to ICU and resuscitated her. We were discharged from the hospital 7 days after the initial surgery.

A “tet” heart can be fully repaired but the child has to be bigger in order to be able to have enough maneuverability to fix what is broken. Gabrielle’s 2nd heart surgery was on November 3rd, 2011. Her surgeon, Dr. Gandhi, said that there were two options for repair. The first option was that they could put a “roof” on the pulmonary artery but she would have no valve. The second option was that they could put a pulmonary conduit or a homograft in where her pulmonary artery would be. This would give her a valve but she would require additional heart surgeries to replace the conduit as she grows. Dr. Gandhi wouldn’t know which option to go with until he was inside her chest, looking at the artery itself. He decided in the end to go with option 2 which means that we face more heart surgeries as she grows.

The second surgery went smoothly and we were in the hospital for 5 days total. Gabrielle stayed on the oxygen nose prongs longer than what they thought she would, but she came out of the surgery extubated (off the breathing machine) and every step forward, though sometimes a baby step, was a step closer to being done. You can read more about the surgery here.

What are the odds? Congenital heart defects affect 4 in every 10,000 babies born. And 10% of the congenital heart defects are some form of Tetralogy. Tet babies are often associated with different defects as well like cleft pallet or DiGeorge Syndrome. We consider ourselves blessed not to have these further complications to deal with. Other than Gabrielle’s broken heart, she is a perfectly developed little baby. Her body will perhaps remember but her conscious mind will not and we are thankful of this.

If you have any further questions of congenital heart defects, or Tetralogy in particular, please feel free to email me at amandaasabee (at) gmail (dot) com. If you’ve recently found out that you will have a child undergoing a similar surgery or you have faced a similar battle, I’d love to hear from you too. The potential for community and support during a child’s illness cannot be understated.

I look forward to keeping the blog updated with her continuing health and our experience through her surgeries and healing.

27 Thoughts on “Tetralogy of Fallot – Our Story

  1. My niece was born with TOF with a couple other complications. She is now 15 years old and a very active athlete. She is our little heart baby.
    I will keep your little heart baby in my prayers.

    • BamboMurzynek Bambo w Afryce mieszka ,czarn? ma skf3r? ten nasz kole?ka.Uczy si? piinle przez ca?e rankiZe swej murzy?skiej pierwszej czytanki.A gdy do domu ze szko?y wraca ,Psoci, figluje to jego praca.A? mama krzyczy: Bambo, ?obuzie!’A Bambo czarn? nadyma buzi?.Mama powiada: Napij si? mleka A on na drzewo mamie ucieka.Mama powiada : Chod? do k?pieli ,A on si? boi ?e si? wybieli.Lecz mama kocha swojego synka.Bo dobry ch?opak z tego murzynka.Szkoda ?e Bambo czarny , weso?ynie chodzi razem z nami do szko?y.******************************************Tydzie?Tydzie? dzieci mia? siedmioro: Niech si? tutaj wszystkie zbior?! Ale przecie? nie tak ?atwoRadzi? sobie z liczn? dziatw?:Poniedzia?ek ju? od wtorkuPoszukuje kota w worku,Wtorek ?rod? wzi?? pod brod?: Chod?my sitkiem czerpa? wod?. Czwartek w gf3rze ig?? grzebieI zaszywa dziury w niebie.Chcieli prac? sko?czy? w pi?tek,A to ledwie by? pocz?tek.Zamy?li?a si? sobota: To? dopiero jest robota! Poszli razem do niedzieli,Tam porz?dnie odpocz?li.Tydzie? drapie si? w przedzia?ek: No a gdzie jest poniedzia?ek? Poniedzia?ek ju? od wtorkuPoszukuje kota w worku -I tak dalej przesylam ci wiersze bardzo znanym poetow zmoich lat dziecinnych min Juliana Tuwima i Pana Brzechwy:-)) sa piekne a wiem jaka radosc sprawia dzieciom czytanie :-) ) buziammmmmmmmmmmmm:**

  2. Dan Kubala on 19 April, 2011 at 6:30 am said:

    I want to wish you the best. Our son Joshua was born with ToF 8 years ago and, fortunately, had a successful surgical repair at 4 months old. We live in Pittsburgh where the CT Surgery dept can boast of a <1% mortality rate post op…1 of 2 hospitals in the USA to make such a claim. He thrives as a 2nd grader and his science project this year is about his surgery….that is how I found you…..Best of Luck to Gabrielle

    Dan

  3. Jennifer on 1 August, 2011 at 12:36 pm said:

    We are experiencing the same thing it seems. Our daughter was born December 23rd, but not diagnosed with Tetrology of Fallot until she was 20 days old and Life Flighted to a Children’s hospital 100 miles away. She had her shunt ssurgery on January 17th, and we spent another 3 weeks in the hospital after that. She has been doing great, although at her recent cardiologist appt her O2 levels have dropped about 11 percent, so we may be facing her nect surgery soon. Just wanted to wish your daughter and family the best, as I know how hard this all can be.

  4. monique on 19 August, 2011 at 4:25 pm said:

    Hi, I cant find you email address! so I hope tou get this msg… I am wondering if you had heard a date for the surgery yet? I am expecting to hear ‘earlt next week,” we’ll see…Still hoping to know someone at the hospital :)

    • Stuku ! Puku! kochani bazdro dzi?kuj? w imieniu Hubercika i naszym za cudown? niespodziank? No oczy prawie na wierz mu wysz?y i jest przeszcz??liwy ?e ma swoja wymarzan? tablice. Nie pozwoli? nikomu jej dotyka? ?eby?my nie zepsuli , a dla taty kaza? powtf3rzy? tabliczk? bo dzisiaj egzamin. Tak?e kochani kto ch?tny na korepetycje to zapraszamy . Jeste?cie niesamowici !!!!! Wielkie podzi?kowania za wasze wielkie serca i sta?a pami?? i opiek? nad Hubercikiem ;) Dla EffkiKonefki forumowiczf3w Mojej Wyspy ?apcie buziaczki *KISSED**KISSED**KISSED*

  5. Krista on 11 January, 2012 at 4:14 pm said:

    Hello,

    My daughter was born Dec 20, 2011 and the next day found out she has tetrology of fallot. We are waiting to go for surgery until she is bigger and stronger! Right now wevthinknwe are going the end of Aoril or early may of this year. Sobfar she is only 3,weeks old, but doing great! I was wondering how anybif your children did with weight grain as new babies, if they were getting breast milk, did anybif your children have to get extra calories added? And if so how it worked out for them??
    Thanks!

    • Krista, I emailed you. I hope you got it. Yes she had trouble gaining weight but we were able to keep her on her growth curve strictly on Breastmilk with no formula supplements, though it was a threat at one point. Love to you as we know the road you travelling.

      • What a beautiful child J is. To have gone thruogh so much at such a tender age, and to still have that wonderful smile, is so precious. I was aware of CHD, purely because Big Bro was tested for it when he was small. His birth defects fell into the VACTERL category, a series of congenitive defects, effecting different parts of the body, which are all related in some way. Luckily for him he only had two of the seven possible problems, but I know exactly how it must have felt. 8 Hours for an operation is a long time it was the same time I had to wait.Thank you for sharing this though. Although I was aware of CHD, I didn’t know exactly what it meant. I shall leave here now a little more enlightened! Fives A Fellowship recently posted

  6. Krista on 11 January, 2012 at 4:16 pm said:

    Sorry for all of the incorrect typing, this iPhone types so funny sometimes!!

    • Sandi you have a beautiful way with words and exnesrsipg yourself. We are all so thankful for our little Brie-nut. Thank you for sharing a little glimpse of your point of view.

  7. Our daughter Claire was diagnosed at our 20 week ultrasound with ToF. She had her full repair at 2 weeks and she’s been doing great ever since! We are still monitoring her closely because she does have some pulmonary stenosis. Otherwise, she’s a beautiful 17 month old who’s walking, saying some words, and loving playing with her two big sisters. Gabrielle is beautiful. Best of luck to you!

  8. Heather in WA State on 12 July, 2013 at 6:52 pm said:

    This may be different because it involves an infant heart transplant, but any heart that has a weakness or prior surgery could have a bad reaction to seemingly harmless over the counter medication. I myself, an active adult with a leaky mitral valve, wound up in the hospital with a dangerously racing heart after one puff on a new asthma inhaler. I don’t want to scare you, but file this away in the back of your mind in case you’re ever in a situation where a new medication is being suggested for Gabrielle. Doctors sometimes don’t factor in all the risks before recommending medications.

    http://www.king5.com/news/local/Judge-orders-UW-to-pay-15M-in-medical-lawsuit-215307431.html?c=n

  9. Sarah Morrison on 26 August, 2013 at 1:12 pm said:

    Our daughter was diagnosed with TOF on her 18 month birthday. Still in shock.

    • Hey, I came across you blog when i was prnneagt with my little girl (who is now almost 4 months old)when i found out the devastating news that she had a CHD. Reading blogs like yours has helped me in so many ways!!!!! She was diagnosed with Tricuspid Atresia, Hypoplastic Right Ventricle, ASD, and VSD and has already had one open heart surgery to have a shunt placed. We also go to MUSC and my little girl is scheduled for a heart cath on May 22. It’s just nice to have someone to relate too. I am so happy for Mason that all went well with his cath!!!!

    • How well I know the boredom of siittng around, waiting for people in the hospital. Free wi-fi is one of the best inventions of mankind, ever.As for what I’m doing today? Well, I’m working, but also doing a lot of research for my garden. Next year I want to try to build a BUNCH of , and grow enough crops to make it so that we don’t have to buy veggies at the grocery store.Crazy, I know, but this kind of small-scale, home-done farming really calls to me.

  10. Hello everyone! I’m Alicia and I was a TOF baby. No other complications thank goodness, I had the full repair at 4 years of age… But I just want you to all know that we do amazingly. I’ll be 29 next week and I’ve had a normal life, full of all the regular milestones. I am set for my second open heart surgery, to replace my pulmonary valve, it’s happening in 5 weeks time. So if you’d like a bit of insight (a fast forward in a way), I’m blogging about it. Onwards and upwards, love to you all xxx

    • Tuwim JulianPtasie radioHalo, halo! Tutaj ptasie radio w bwzzoorym gaju,Nadajemy audycj? z ptasiego kraju.Prosz?, niech ka?dy nastawi aparat,Bo sfrun??y si? ptaszki dla odbycia narad:Po pierwsze w sprawie,Co ?witem piszczy w trawie?Po drugie gdzie si?Ukrywa echo w lesie?Po trzecie kto si?Ma pierwszy k?pa? w rosie?Po czwarte jakPozna?, kto ptak,A kto nie ptak?A po pi?te przez dziesi?teB?d? ?wierka?, ?wista?, kwili?,Pitpilita? i pimpili?Ptaszki nast?puj?ce: S?owik, wrf3bel, kos, jaskf3?ka,Kogut, dzi?cio?, gil, kuku?ka,Szczygie?, sowa, kruk, czubatka,Drozd, sikora i dzierlatka,Kaczka, g?ska, jemio?uszka,Dudek, trznadel, po?mieciuszka,Wilga, zi?ba, bocian, szpakOraz ka?dy inny ptak. Pierwszy s?owikZacz?? tak: Halo! O, halo lo lo lo lo!Tu tu tu tu tu tu tuRadio, radijo, dijo, ijo, ijo,Tijo, trijo, tru lu lu lu luPio pio pijo lo lo lo lo loPlo plo plo plo plo halo! Na to wrf3bel zaterlika?: Cf3? to znowu za muzyka?Musz? zajrze? do s?ownika,By zrozumie? ?piew s?owika.?wir ?wir ?wirk!?wir ?wir ?wirk!Tu nie teatrAni cyrk! Patrzcie go! Nastroszy? pif3rka!I wydziera si? jak kurka!Do?? tych arii, do?? tych liryk!?wir ?wir czyrik,Czyr czyr ?wirik! I tak zacz?? ?wirzy?, ?wika?,?wierka?, czyrka?, czykczyrika?,?e a? kogut na patykuZapia? gniewnie: Kukuryku! Jak us?yszy to kuku?ka,Wrza?nie: A to co za spf3?ka?Kuku-ryku? Kuku-ryku?Nie pozwalam, rozbf3jniku!Bierz, co chcesz, bo ja nie sk?pi?, Ale kuku nie ust?pi?.Ryku cho? do jutra skrzecz!Ale kuku moja rzecz! Zakuka?a: kuku! kuku!Na to dzi?cio?: stuku! puku!Czajka wo?a: czyja? ty, czyja??By?a? gdzie? Pi?a? co? Pi?a?, to wy?a?!Przepif3reczka: chod? tu! Pf3jd? tu!Masz co? daj mi! rzu? tu! rzu? tu! I od razu wszystkie ptakiW szczebiot, w ?wiegot, w zgie?k o taki: Daj tu! Rzu? tu! Co masz? Wif3rek?Pif3rko? Ziarnko? Korek? Sznurek?Pf3jd? tu, rzu? tu! Ja ?wier? i ty ?wier?!Lepi? gniazdko, przylep to, przytwierd?!Widzisz go! Nie dam ci! Moje! Czyje?Gniazdko ci wij?, wij?, wij?!Nie dasz mi? Taki? ty? Wstyd? si?, wstyd? si?! I wszystkie ptaki zacz??y bi? si?.Przyfrun??a ptasia milicjaI tak si? sko?czy?a ta le?na audycja.

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  12. Janet N Salazar on 18 October, 2014 at 10:16 pm said:

    My little munchkin was diagnosed with TOF and is the most painful thing ever, i feel as if any point i am going to loose it, she was born premature at 3.6 lb and been in hospital ever since she was been born she is currently on oxygen trying to maintain her levels higher than 82 till she can weight enough for her repair, meanwhile the shunt is still in the air and the catarac prodecure. It brakes my heart what shes going through right now she looks very tired and out of it with the medication and assesments shes going through if can switch my heart with hers in a blink of an eye i will do it

    • Witamy wieczornie ;) Kochani weenekd zlecia? poza internetem , wszelaki przygotowania do szko?y po tak d?ugiej przerwie , Hubercik dzisiaj by? na urodzinach u kole?anki A mnie ostatnie dni na porz?dki co? wzi??o ot tak przed ?wi?tami . Zajrzeli?my tez do listf3w i policzyli?my autografy i Hubercik naliczy? ich 89:) Miedzy nimi poczytali?my ponownie niektf3re listy , milo by?o powspomina? Dzi?kujemy za wasz? obecno?? i ?yczymy owocnego kolejnego tygodnia

    • Pallavi on 29 April, 2015 at 7:36 am said:

      Hi my son was diagnosed with a VSD at the 2 week scan but when he was born pre at 34 weeks 5 days with a weight of 1625gms he was diagnosed with TOF . He he currently in NICU since 18 days and tbey are feeding him with tube. Though we try bottle also but he gets tifed vedy easily and doesn’t drive nk much from the bottle. Doctors have advised to wait for the surgery till he is about 4kgs unpess there is an emergency. Scared to death

  13. Excellent post however , I was wondering if you coulod write
    a litte more on this topic? I’d be vdry thankful if you could elaborate a little
    bitt further. Thank you!

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