Leo's Story: Diagnosis and Treatment of congenital heart defect, Tetralogy of Fallot

[@Jackie_Rose_]

I was diagnosed with this, obviously these are simplified but I had 3 holes, and two ventricles were switched, so my blood was going the wrong way. I had a 12 hour open heart surgery. I’m still very grateful to the doctors that saved my life. I want to give all the love to the current patients going through this.

[@SS-xr2tv]

💙💙💙💙💙💙💙💙💙💙💙

[@bk-qr5nx]

How old are u

[@SentiaT-f8b]

Hey my daughter was diagnosed with this. Need to talk to someone who understand 😢

[@Jackie_Rose_]

@@SentiaT-f8b hello!! You and your daughter are very strong. It may be a long journey but everything will turn out just fine

[@erockcityprod]

I am a twin and I was born with this defect. My twin brother was perfectly fine. Back In 1985, my initial repair till I grew bigger was at three weeks old with the full open heart surgery at 18 months. I was taken care of at Mass General and Children’s Hospital in Boston. I’m now about to turn 35. Very grateful for the possibility of this surgery .❤️

[@SS-xr2tv]

💙💙💙💙💙💙💙💙

[@ab_xcqi5708]

I am a twin too, I was born with ToF, and I'm very thankful to be alive 🙏

[@astonasamoah1261]

My boys(twins) were both born with TOF. One recovered naturally and the other had to undergo surgery at Children’s national hospital in DC at 6 months old. They are turning 2 now and full of energy. Grateful to the surgeons for the good work they do.

[@rinuelsaabraham5005]

@@astonasamoah1261 Hey. How did the other one recover naturally?

[@rinuelsaabraham5005]

@@astonasamoah1261 Hey .please reply.

[@tracyharsin4995]

I was born with TOF in 1969. The surgery was still new and my final repair was not until I was 5 years old. I am 50 years old now and have had very little problems so far. Happy life to you little one.

[@ibtesamawad746]

💙..

[@gregoryregehr4988]

Me Too Born with TOF with VSD in 1966 my Final Repair when I was 5 now 55 have high blood pressure for last 15 years which is monitored every year with cardiac echo. enlarged aorta branch must always be monitored with TOF.

[@SentiaT-f8b]

You give me give 😢my daughter was born with it and I been so sad n crying all day

[@tahirahmed1776]

Great doctors who repair such big defects and make children happy and healthy....Leo parents looks so happy after such big operation with their kids..Please pray for a kid of my family who tomorrow having this operation in Pakistan, Lahore.....

[@karanjajosephinewangari5462]

Tahir Ahmed How is your son now??

[@D0-vid]

Tahir Ahmed how Did it go?

[@gladysh1526]

This is what my daughter was born with 😢❤️ I was so scared but Thank God she made it through 😇🙏🏼 She is now a 3 year old, playful, strong and beautiful girl💕

[@judeayuste3574]

Did she undergo surgery?

[@SentiaT-f8b]

Hey my daughter was born with it and I'm scared she was only one day old

[@AlineaUpcycling]

What a sweet little boy! Such a trooper. I’m glad TCH gave you a piece of mind, Leo was truly in amazing hands.

[@alijohn1405]

My brother was born with this. Was operated on by the best in the world ' Magdi Yacoub ' and is now 19, doing medicine at university training to became a doctor.

[@bookasessions7056]

👍👍👍👍👍👍👍👍

[@bookasessions7056]

👍👍👍👍👍👍👍🏿

[@Asad_3DArtist]

Hello Ali John my 5 year old daughter suffer from TOF by birth Me already done her bypass and other process by doctor's say Pakistan had not enough machinery to treat her issues . Kindly guide me and give details about Maghi yacoub . I'm worried so much for my little angel 😇.

[@SS-xr2tv]

🙏🙏🙏🙏🙏💙💙💙 thank you so much for sharing!

[@louisesimms]

My Dad died age 37 from this congenital heart condition. He was born in 1962, he had experimental surgeries done by age 18 and was one of the first ten in the world to go on to have the Ross procedure done. I was devastated when he died. When I see how simple it is now, I cry, knowing my dad was part of making that happen for others, bittersweet. He was so brave never knowing what would happen in those surgeries.

[@Cordiallymichemarie]

I am 23 weeks and my baby was diagnosed with Tricuspid Artesia...these videos give me hope.

[@dee_gee_bee6072]

My son was diagnosed with a VSD at 22 weeks in utero as well. He went to Arkansas Children’s just after birth to have an echo. They discovered that he actually had a VSD and two ASDs. We went through almost the exact same process. This video hit me hard. It took me back to all of the unknown feelings and confusion but also the triumph. He had surgery at 2 months old to repair the VSD and the larger of the the two ASDs. He is 10 months old now and if you met him, you’d never know. Thank you so much for this. This is so good for people that have been through it as well as the ones who don’t have any idea. One in 100 babies is born with a heart defect, and modern science still can’t prove why. (Our baby had the perimembranous VSD and two secundum ASDs along with Tricuspid stenosis.)

[@msgonzalez1016]

were you able to have a natural birth?

[@khadijatjameel7354]

Pls were did the do for ur baby

[@tanyabrindle5448]

Alex and Phil, so saddened by the turn this joyous occasion has made. The situation that Phil went through was long ago. There have been many advances since then. The path this little one may travel with you may be very different. My thoughts and prayers are with your family.

[@joannepazara3791]

I needed a happy story after reading so many sad ones ! PTL

[@aayeshabi4695]

My baby boy too had CHD but he is no more he lived for 4 months miss him

[@atulgokuyamaha7]

I have to take decision for my niece as a father..Yet i am not married but still has some crazy experiances as a parent...My niece is fine now after surgery those 4 hour of surgery is really stressfull but she fine now..I said to surgeon whatever decision you will took we will support you whatever the outcome will be...She is now heathy and growing...

[@clio_7070]

My son was diagnosed with Tetralogy of Fallot when he was two days old. I am so glad I gave birth in an university hospital where specialists discovered his heart defect quickly. Next week my baby has surgery and I am so afraid.

[@merrymerry742]

Can I please know.how your beautiful son doing .hope he's fit n fine now

[@clio_7070]

@@merrymerry742 thank you. The surgery went very well and his heart is good now.

[@belakus1352]

Am 20 th week pregnancy but anomaly scan shows fetus have fallots tetralogy so doctor suggeste to remove the baby but I can't accept it what to do I want my baby can I continue my pregnancy or not plz reply me

[@clio_7070]

@@belakus1352 I am sorry you are going through this. Don't remove the baby. Tetralogy of Fallot is very common. It's scary for parents but my son's heart surgeon said for him it was just routine. My son needed ONE heart surgery. He has a heart ultrasound every six months. Everything is fine. Some children with ToF need two surgeries. But then they live a normal life. Change your doctor, love. You got this.

[@belakus1352]

Tq so much for your advice but how much it cost for surgery

[@aewright1986]

Leo will be amazing i am 36 years old!! With TOF so happy

[@xandylove4389]

my baby is also diagnosed w/ truncus arteriosus. we are now on our 29 weeks and they told us that he needs surgery when he goes out. i feel so devastated. this s my first pregnancy also. they said that we have to be ready financially and in that i think it will be very hard for us. they told us that thr is no asurance of survival even with surgery. but we are working on it now, we are searching for charity and programs. for now that he is still inside me, dr s nothing we can do but to pray and trust in GOD.

[@eileencortes3502]

God is great and powerful

[@reenaahuja9501]

How are you all doing now ? Praying for you and your bub 🙏

[@trishab.1477]

I'm 22 years old, the doctor said to my mom and lola (grandmother) my heart will slowly close when I reach 7 years old BUT! They didn't close so I still have CHD. My Mom and Lola thought it's just CHD but when I turned 18 years old, I faint like crazy like I faint 6 times that year so we decided to go and get me some check ups, and the doctor see that I do have Tetralogy of Fallot WHICH IS very rare that I'm still alive and kicking after not getting any medication so the doctor said I'm a miracle and I need to go through Operation this time 😊. Ps: If you do have heart problem fainting is very dangerous like you will trigger heart attack and die AND mind you I didn't faint like 6 times a year. When I was a child I didn't faint like 6 times in my 17 years so when I turned 18 and like I faint 6 times that year it cause a lot of trouble. Plus my family let me do whatever I want I run and jump, I exercise (it's very dangerous mind you). So I'm grateful that despite my condition they still want me to live a normal girl. 🙏🏻💜💜😊😁

[@Noname-ul9fx]

My niece also has tetralogy of fellot with pulmonary atresia but she's undergone 4 open hearts in her 18months.

[@sachalouis8032]

My son is 16months and we're still waiting for a doctor to perform this surgery on my son its hard and stressful but we have hope he will receive it Covid cause way to many setbacks

[@vernalynvarona-chan4293]

can i ask how much did it cost you?

[@11SayRuh]

Does anyone have tetralogy of fellow I do

[@sohanasanta8191]

I have.... TOF with pulmonary atresia 😊 & I'm 24 years old now without any repairs

[@helenrivera9004]

I had my AVSD repaired in this hospital

[@Kitsar_]

My grandson is 2 weeks old but he needs the surgery they were going to wait but they're going to do it next week is very scary

[@merrymerry742]

Hope he's fine now.

[@redr4074]

God bless him 🙏 and doctors are great believe in them 🙏 my prayers goes out to your grandchild. My son is due next month and his been diagnosed with same thing we as parents believe that he God will be there to support him and our doctors here in Canada are as equal as God's and we believe in them 🙏

[@tabrez786ify]

I am a 6 months pregnant girl for the first time and i have just done Entire Sonography of my stomach in the report it's shows baby's heart beat is beat slowly so what to do plz help me for this.

[@esnartsibande795]

Keep praying am sorry for what you are going through, am 16 weeks and my baby has fluid in the bladder and the doctor thinks he has abnormal umbilical cord vessels , an abnormal heart and they think they saw that his foot might be tucked in. It was just too much information to process don’t know how to feel . I just pray that God should help my baby and yours too.🙏🏾

[@fatimaabdullah2524]

my daugtr also born wd ths defect.now she is 4.5 years.her surgry are doing next month.i m so afraid.i m very tense.

[@ms_dlou]

I jus gave birth on 17th of December in a country that does not treat this condition and Im so scared.

[@riadas8208]

Sweetest boy ever

[@Thehistorylover101]

I was born with this defect i have to have surgery tommorow for th second time because it reopend i am so scraed so wish me luck

[@Asad_3DArtist]

Emily wall which hospital your surgery is done and now how are you

[@LuminosityLi]

Are you still alive? :(

[@Thehistorylover101]

@@LuminosityLi yup it went all well

[@LuminosityLi]

@@Thehistorylover101 oh that's so great to hear :)

[@LuminosityLi]

@@Thehistorylover101 I only needed to get surgery once, so I'm scared that something wrong will happen and that I will need surgery again

[@farhanakanwal997]

I am 21 weeks pregnant and a week ago i got to know that my naby has tof ...scared to death...may Allah shower His mercy on us and to all who are suffering from any pain Ameen

[@farahusmani5153]

How is your baby doing now?

[@eachoneteachone922]

My son was ❤diagnosed at 😢2 years old . He now 10 I was scared at first 😢

[@yaseminornekoglu6636]

Me too i was born with it i’m really great i’m 15 ❤️

[@martinjanssen79]

My son was born 2 months later with the same disease. It's a parallel story here in germany. Just the pulmonary valve must replaced in maybe 6 or 7 years. So fingers crossed and good luck to the united states. Funny sidefact: One of my son's best friend , born on the same day in the same hospital, his name is Leo (even with long curls).

[@paigekk]

I had many surgeries here starting at 5 months with Dr. Charles Frazier, I have teterolagy of fallot. I went to camp pump it up and now I go to camp yolo!

[@aewright1986]

I am 36 years old with a 12 year old son but yes born with TOF

[@SentiaT-f8b]

Hey my baby was born with it. Can we talk 😢i been so sad

[@LillyCapewell]

Aw my almost 2 yesr older sister was born with this and not long ago went hospital for chocking on chicken but she's such a brave girl and puts up a fight snd loves posing for pictures and loves laughing when I'm around 💖 💗 💓 💕 ❤ and loves fidget toys 😊 (he names ruby 🔴)

[@angelikabertrand4045]

Was born with TOF missing Aortic Arch , 2 holes in my heart. First surgery 1972 Germany. I have all 4 criteria. Since than I had additional 6 more surgeries. Also have Aortic Aneurysm.. I m now 59. He ll be fine. God Bless

[@thiagokawano1618]

I was born with TOF and got my first surgery at 1 and a homograft at 10. Both without my consent, as I was a minor. Based on my experience though, he will probably regret it. Imagine learning you were supposed to have died, but now you are basically an abomination rather than a miracle, with no future and no purpose, though that may also be because I have a twin brother and my parents explicitly stated they originally didn't want twins.