New to this....Tetralogy of Fallot anyone?

Geneva - posted on 01/29/2009 ( 52 moms have responded )

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My name is Geneva, I have a 5 1/2 tr old son who was born with Tetralogy of Fallot and two surgeries later...he is a happy healthy rambunctious boy! Scary to see your baby wheeled into such a serious surgery, and no easier the second time. I am here becuase only those who have been through it understand. Hello!

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Sarah - posted on 09/07/2013

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Hello
I am a mum to 4 month old baby boy with TOF and no known genetic abnormalities. Baby was diagnosed at our 20 week scan and we then had an amino to check for downs and other genetic conditions. It was such a difficult time for us knowing our baby would be poorly, the cardiologist from GOSH was fantastic and explained everything about the condition so clearly. I realised that my one job from then till term was to fatten my baby up as much as possible and get him to term so he would be stronger for his surgery. It worked!! Born at 41 weeks he was 8lb14oz (ouch!) and got apgar scores of 10 which made me cry. Leading up to the birth I was extremely apprehensive, despite knowing about the condition during pregnancy I also knew that the best place for him was in the womb as it was only when he would start to breath that he would become symptomatic. I wanted choices during birth like using a birth pool and the medical team were very careful and ensured I was on a consultant led ward with paediatricians on standby. I really wanted to have skin to skin cuddles with him when he was born and despite him bring pink and healthy at birth they whisked him off very quickly to Intensive care for monitoring. Being separated at this time was so difficult for me but I was reassured that my husband remained with him at his bedside. After 5 days he was discharged having his diagnosis confirmed by echo, he didn't require any intervention or meds and they describe his anatomy as the perfect balance with his pulmonary artery just narrowed enough to limit the impact on heart and lung but not too much to cause spells.

My husband and I as you would expect have been very careful with him especially when he cries trying not to let him get too upset and worked up. He has gained weight well although dropped from 75 to 25th percentile. He is now 4 month old and we haven't had a single episode or scare and are immensely grateful got this. It has been easy at times to forget he is poorly as he looks so well. Friends and family frequently ask if him being well means he won't need surgery and this has been quite difficult for us to keep explaining as no one seems to appreciate the seriousness of this situation.

He goes in for full repair in 10 days and I cry every day. I cannot imagine how I will be able to hand him over and am scared to death of the possibilities. As we are in the UK we have been referred to Great Ormond Street, at least we have some of the best medical staff.

For those parents that have been through surgery, how do you cope with the lead up and on the day?

I feel for those of you with a diagnosis after birth, this must be such a shock and you must be so strong.

Does anyone have any tips for post surgery? Clothes toys etc?

Sarah x

Clare - posted on 07/22/2009

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my son is 15weeks old and was born with TOF although we found out when he was around 10weeks, it's extremely scary knowing he has to have a heart catheter done in 3months to see why his oxygen levels are so high and open heart surgery 3months after that. it's nice to know there are so many positive outcomes to this condition when all u can think about are the negative wat ifs.

User - posted on 03/06/2014

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Lily - posted on 04/06/2014

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Hi I am a 17 year old with TOF and just wanted to say to all the new mums with children with the same condition, as the child it can bbe very confusing sitting there in the doctors room while he talks only to the parent so I would advise you to try and explain it to your child the best you can becuase we are just as scared as you are.

Just remember we can lead extremely normal lives and grow up to be healthy :)

Emma - posted on 09/21/2013

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Don't cry, this is THE most positive thing that has happened to your baby yet. You will not believe the difference in your baby when he has pink skin!!! As soon as he comes out of Theatre all wired up and on life support, all that for a few seconds will be secondary, because the overwhelming feeling of '' oh my god everything is going to be alright'' will take over as you look at those pink healthy cheeky chops!!

Wouldn't bother with toys in intensive care, your baby will be intubated and given a paralysing drug that shuts his body down , allows the machines to function his internal organs, so that his heart gets all the rest it needs to recover from the surgery, his skin will be exposed, usually just have a nappy/diaper on, so you will be able to touch him, and he is likely to be able to feel it, reading stories is said to have an effect, there is a chance they can hear it, though this isn't proven. Try not to spend hours and hours at a time with your baby, you are in an Intensive Care Unit and there are some very VERY sick children all around you, and sadly, some of them don't make it, and sadly, you are sat right in the middle of it, small bursts in and out, go check, read a story, give him a gentle massage , then leave for a couple of hours, you need to stay positive when negativity is all around you,

When they extubate your baby, and he can breathe without assistance , they will stop the paralysing drug and allow his organs to function independently again, it's not a good idea to stay while they extubate, or while the drug wears off, as they convulse as their bodies ''wake up' , this is NOT dangerous, this is a muscle response NOT a 'brain convulsion' , extubation is uncomfortable to watch and although you will be allowed, I doubt you will be encouraged, when the tube is removed the natural reflex for the baby is to 'gag' and grab at the very thing that he feels is choking him, it's noisy' frantic and unpleasant and totally pointless to stay for, go have a coffee, when you return, your son will be breathing by himself, and will be awake!!!!

He will be moved from ITU onto a cardiac ward, and recovery from this point is swift and dynamic, within a couple of days surgical drains will be removed, he will be eating normally, and will want to get the hell off the bed and cause trouble! At this point SP02 levels will still be unnaturally low, ( my daughters was 78 in the air) but then they will give medication, Josie was given diuretics ( spironolactone and Furosemide) and also a drug called Captopril , this boosts the SP02 levels, these drugs are typical fodder for Fallots post repair, and after a year, they will usually be drug free.

Common complications, pulmonary oedema , IV diuretic will be given and baby will be placed in an elevated position until it calms down. .

Good ;luck, ( you dont need it, all will be well. )

Emma - posted on 09/21/2013

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My daughter has Fallots, she had a BT shunt when newborn, then full repair at 8 months, she had severe pulmonary stenosis prior to the repair, was a 'blue baby' the shunt failed, so they replaced the pulmonary valve with a piece of Pig!!!!! Full repair was amazing, she came out of Theatre and I didn't even notice the monitors and wound I just saw this pink baby, for the first time, she was pink, she looked fantastic, they extubated her 3 days later, and the rest is history, until now, fast forward 13 years and our blissful complacency has come to a grinding halt.

Six months ago she started having blue spells, no other symptoms and it was just around her chin and upper lip, long story short, the pulmonary valve that was replaced is now prolapsed, and she is symptomatic, chest pains, swollen ankles, excessive sweating, and an MRI revealed that Josie is now in heart failure territory, so we are due for surgery, they sadly cannot repair the valve, so we go back to open heart surgery. We are trying not to get into warfarin territory as this drug itself has dangers and risks, especially to youngsters, diuretics we hope will keep her well until surgery. .

I was not scared when she was a baby, as soon as I saw her 'pink' even though she was still quite unwell, I knew that all would be fine, now that she is a teenager, now that I am older and more risk averse I have that creeping feeling, the one where the TOF I grew so cocky and complacent about, has gone back to bite me in the arse.

Carly - posted on 04/01/2013

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Hi
thats was the same year my son found out he has it . He was bon october 2004 and it was missed at birth . It was only found as i took him to the walk in doctors as i felt soemthing was wrong when i was feeding him like he couldnt breath proper and then crying all the time . My husband thought it was because i was a new mum . It turned out he had tof and went straight to a&e then admitted to hospital then moved to see doctors at the childrens hospital in manchester . Hes had one open heart op since birth and is now 8 but have just been told he will need 4 to 6 more ops which was abit of a shock as we thought it might only be one . He having some teeth out soon and that has been all hard work and stressful x

Carly - posted on 04/01/2013

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Hi again
Yes we were also told not to let him cry for a long time or get worked up . He also had a dummy and i was very protective anyway so always cuddled him . He was a terrible sleeper and always woke up in the night up untill the age of about 3 or just over . Sorry i cant telll u it stopped after the op as with my son it didnt but all babys are different . I have a 1 year old now and hes fit and healthy and is a worse sleeper than owen was ! . I was told baby with heart condtions use more cals so wake for extra feeds . This is what the hospital told us hens the special fatty milk he was put on . ........... xx

[deleted account]

Hi Carly

Thanks for that! Very helpful, I will have to ask the Cardiologist/Dietician about Infatrini. The other thing was the doc said not to let him cry, however I am now 'spoiling' him with a dummy and lots of cuddling before sleep... did you do this as well? Now when he wakes, he always needs his dummy/cuddles to get back to sleep... did you have to keep doing this until his operation? any other advice to get him to sleep?

Many thanks
Melanie

Carly - posted on 03/29/2013

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Hi melanie
My son has tof . Hes now 8 and doing really well . He had open heart surgery at 7 months old . Very scary time for me and my husband but couldnt believe how he just wanted to be playing a week later ! Ihave never used calogen . We were given a different milk called infertreeny which already had the extras in for fatting him up and the doctors would bring it to out house . Owen was fine with it . It was easier than adding to his milk . As for spells owen never had one thank god although there was a time i thought he was having one and was quite scary . The ‘Tet spell’ (also called ‘hypoxic spell’, ‘cyanotic spell’, ‘hypercyanotic spell’ or ‘paroxysmal dyspnea’) most frequently occurs in young infants with Tetralogy of Fallot but may occur with other congenital heart defects that have pulmonary or subpulmonary stenosis and a VSD, and at any age. Common precipitants include crying, defecation, feeding, waking from naps (low systemic resistance), fever, dehydration, tachypnoea / tachycardia due to any cause, and medications (e.g. ACE inhibitors). They tend to occur in those with mild-to-moderate cyanosis at rest and are more common in children who are iron deficient.



They are characterised by:

· Period of uncontrollable crying / panic,

· Rapid and deep breathing (hyperpnoea),

· Deepening of cyanosis,

· Decreased intensity of heart murmur,

· Limpness, convulsions and rarely, death.



Hypercyanotic spells need to be recognised quickly and effectively controlled to prevent the development of serious complications from prolonged hypoxia. While medical intervention is indicated, many episodes are self-limiting. Those involved in the care of a child with Tetralogy of Fallot should be familiar with a spell’s presentation and early management.

We were told if it ever happen to push there knees together and up into there tummy and rub there bk and call for help asap . Hopefully this will never happen to you . I hope this helps and your son gets well son . My son still needs more surgery but is doing fab! x

[deleted account]

Hi Everyone

I have just found out my son of 4 months has TOF. I am just in the process of finding more info about TOF on the Internet when I found this site - wow - so many of you have such similar / inspirational stories - I don't feel quite so alone.

I was wondering if someone can help...I have 2 main questions:
1) how do I know when he has a spell? At this stage he goes a little blue when he cries and then if he stops it goes away. The doctor says in the next few months before he has surgery I should watch him carefully, and if he spells to go to hospital - what am I looking for? Any triggers?
2) the doctor / dietician have given me some calogen of which I need to give my son 15ml per day to fatten him up so he gets bigger so they can operate. Has anyone else used this? We're they happy with it?

I would love to hear from you :)

Thanks
Mel

Lucy - posted on 12/27/2012

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Hi everyone, my son was born with TOF with absent pulmonary valve and an imperforated anus. He had his heart cath and repair at 5 weeks old. He got chylothorax which kept him hospitalized for 9 weeks. He is now almost 9 months old and will soon have his surgery to reverse his colostomy. He has had a total of 4 surgeries already (heart and anus) and it doesn't get any easier handing your baby over to the nurses. Happy to have found this group and have other moms to share this experience with.

I was told from a genetic doctor that when a baby is born with more than one defect, it is almost always a syndrome but they don't know which one my son has. He tested negative for DiGeorge. Has anyone else been told this? I love my son so much but am having a hard time enjoying just being his mother because I keep wondering if he's on track developmentally, if this or that is normal and trying to figure out what syndrome he may have. The unknown is freaking me out.

Elizabeth, your story is an inspiration so thank you for posting it!

Rosalia - posted on 11/25/2012

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Hi.. My name is Rosalia.. MY daughter has Tetralogy of Fallot.. she had her first surgery waiting for her next one.... Hope you guys are fine..makes me happy to see kids.. growing up.. my daughter is one 20 months old..

Lisa - posted on 11/14/2012

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Hello Geneva,my son is now 8 going on 9 in February prays God! He was also born with Tetralogy of Fallot..He has also had 2 Open Heart Surgeries & 1 Cardiac Cath...I hope your son is doing well & I would love to share stories with you anytime,I am sure it will benefit both of us! Hope to hear from you soon,Lisa :o)

Bridget - posted on 10/31/2012

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Hi, my name is Bridget. I have a 13 year old daughter that has Pulmonary Atresia with Ventricular Septal Defect. She has had 4 open heart surgeries and her last surgery was on May 2, 2008. She is doing great and is such a miracle. She leads a completely normal life other than extra curricular activities.

Lisa - posted on 10/22/2012

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Hello,

My name is Lisa,and my son was born with Tetralogy of Fallot in 2004.He has had 2 open heart surgeries & 1 cardiac cath.It would be nice to chat with other Mom's who are going through or have gone through similar stories. :o)

Nicole - posted on 10/03/2012

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Hello Geneva! my son also has Tetralogy Of Fallot and had the full repairment done when he was two months. He also has Double Aortic Arch, which was also repaired and now he is trached due to respitory issues and he has a mickey button in his stomach for feeds. It's tough to see our children going through these things, but all we can do id pray and be their moms because we love them so much. i hope all is well with your child.

S - posted on 10/01/2012

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We live in NC. What about you? My daughter is on one med, a beta blocker. She is growing normally, and no others issues have been diagnosed. She does breath heavily often. We have had a couple of very short tet spells. Does your baby have them?

Dorne - posted on 09/30/2012

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Hi, thanks for your reply. This is my second child, my first is healthy no problems. They diagnosed the digeorge at 35weeks pregnant along with the TOF with absent pulmonary. My daughter is on heaps of medication and almost 2months but remains tiny like a new born although is developing as babies do, holding her head smiling laughing etc. does your daughter have any other issues with her TOF where are you living..... It's scary times for sure

S - posted on 09/30/2012

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Hi. I can't believe I am writing to strangers on the internet, but I think it might help.



To Dorne: I have a 5-week-old beautiful baby girl with TOF. As far as I know she does not have other medical problems, but I have been wondering about this of course. Did they diagnose your child with digeorge syndrome at birth? Was your TOF diagnosed prenatally? I found out about 1 week after birth.



It is looking like my child will also have to have surgery sooner rather than later.



Everyday is so hard. This is my first child. How about you?

Dorne - posted on 09/26/2012

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Hi I am almost in same boat I have a 7week old with TOF and absent pulmonary valve she also has digeorge syndrome, they said it would be a year for her first op but its looking alot sooner, heart breaking when there is nothing I can do.

Elizabeth - posted on 06/28/2012

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Hello everyone,

I am new to this website and feel like I am "breaking in" to some degree. Although I am not a mom, I was actually born with Tetralogy of Fallot and am now 25 years old. I just recently started looking for chat rooms/support groups, only because I think I have always struggled with wanting to discuss this part of myself with others. However, I am also writing because I think what I have to say might be encouraging to mothers with young children facing these surgeries.

I had my definitive repair at 3 years old. Thankfully I don't remember, but it was harrowing for my parents to surrender me into the arms of the nurses. However, I still get inexplicable anxiety when going to the doctor, especially the cardiologist, so I know that the memories are buried in my psyche somewhere.

The upshot of all of this, so far, is that I am healthy, increase in physical strength every year, and am able to handle everything that I have set out to do in my life. I have not yet needed any kind of other surgeries, and have not had any increased leakages in my repair as of my last check up about a month ago.

One thing I am slightly ashamed of to some degree is the fact that I don't really like sharing this part of myself with anyone other than family and close friends. In elementary school and high school, I couldn't really hide. I have a zipper, which was probably more visible when I was younger but still visible now. I couldn't run and do a lot of physical running in PE, which of course inquisitive kids wondered about, since K-12 is all about fitting in and avoiding scrutiny. Early elementary school teachers were frustrated with me since I was on an IEP where I had shortened school days due to low stamina and I had truncated homework assignments. On the outside I looked normal and healthy enough, so plugging into my physical issues were sometimes difficult for others outside of my immediate family. That said, my parents were (and still are) my steady advocates, and I couldn't have succeeded and grown in the ways I have without their love and sacrifice. Believe it or not, my mom still does most of the talking during cardiologist check-ups, especially when discussing surgery particulars, because I have a mix of clamming up and just not wanting to talk about the issue much.

However, I really want to emphasize the positives here. I've been able to set up a solid career for myself, I enjoy my life, and I am blessed to not have to excessively worry about my health, because I am strong, healthy and happy. Adult life was much easier for me when I got to college: I dictated my own schedules, took classes that played to my strengths, and met people who stimulated my intellectual interests. I liked college so much that I decided to stay: I am currently a doctoral student and graduate teaching assistant in the humanities field. My schedule is demanding and the workload is heavy, but I've excelled and never been to ill or tired to keep up. This makes me the most proud, after not having a whole lot of energy to keep up in elementary school. I do get apprehensive about the thought of another surgery down the road, but improved surgery technologies give me hope that no matter what comes, it may not be that invasive like my original surgery.

Please let me know if you've heard of any chat rooms etc. for young adults with Tetralogy of Fallot. In the meantime, I want to be a positive voice from your children's future. Although recovery from surgery may be difficult and outsiders may not understand, there is no reason why your child won't be able to accomplish anything that they set their mind to. Being able to put this on paper has been a real blessing for me, and I hope this message is positive for someone on here.

Gwen - posted on 04/28/2010

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My baby is almost 4 months old and he was born with TOF and AV Canal. He has been in the hospital 4 weeks now, following his surgery. He had horrible tet spells that lasted 15 minutes and he would desat down below 10 sometimes. It was very scary, but he's at least had the surgery. We are hoping he will come home soon.

Cindy - posted on 02/06/2010

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Hi Geneva. I am Cindy. I have an 11 week old who has Tetralogy of Fallot. We are awaiting surgery. She was scheduled for today but we had to postpone it till next week as she has a cold. Paula was born 4 weeks early and weighed 5 lbs 8 oz. She is now 8 lbs 8 oz. It is wonderful to see so many success stories.

Sarah - posted on 01/08/2010

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Thank you ladies for sharing. My 3 1/2 yr. old son (who was born with TOF with VDS) is looking at possibly having his second heart/valve surgery this year. We will not know more until Apr. Other than this news, which we received in Oct., he is doing well. I'm so thankful for the support we have here, as for the first year of his life I felt I had very little (even though I have my family). I pray that each of you and your families are doing well.

Tarren - posted on 11/12/2009

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hello Geneva! i have a baby boy of 18 months, he was to born with tof and is due for surgery next week. i am so scared! he is so tiny for this but what can i do. anyway is ur babys tof completely fixed?

User - posted on 09/26/2009

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Im only 18 but i had my son two months ago & hes a tet kid & he was diagnosed with the worse case of tet with pulmary artresia but he has already had two open heart surgerys & has done WONDERFULLY! im not sure where you live but the doctors these days are amazing how they can handle these things & how far technology has come! Its so incredibly hard to watch your child go through that i've done it twice already and im going to have to watch it a few more times in my sons life but God is GREAT! and he will get you through it! yall are in my prayers!


"For you created my inmost being; you knit me together in my mothers womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." -Psalm 139:13-14

Renee - posted on 09/17/2009

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Yes my youngest daughter was born with it too and she has had 3 surgs. she will still need more but is very active, smart, and full of life. It is not easy at all to go through this. My daughter did get Endocarditis about 4 weeks ago and she was at Stanford for 10 days. she has a picc line and is getting Penicillin through it every 6hrs for about 6 weeks. Its is hard but we have to keep their spirits up and let them live in a bubble. Life still goes on and we just need to pray and take it one day at a time.

Pamela - posted on 09/17/2009

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my little girl was born with tetralogy of fallot with absent pulmonary valve. she had her 1st surgery at 3 months, and her latest surgery was july 8th to replace the non-existing valve she had. she is doing great! where she gets her energy from, who knows! anyone who is going through this, feel free to contact me.

[deleted account]

Hi. I was born with tetrology of fallot and have had 3 surgeries so far. I am due for another one probably within the year. I have two kids, Connall 4 and Raedyn, 2. Raedyn was born with a CHD as well, truncus arteriosis. She has had one surgery and is doing great! It is a bit easier handling everything with my daughter because I already know so much about it, but it is also more difficult because I have been in her postion and I know what she is going to go through. I hate seeing her go through it all, I feel guilty even though I know it isnt my fault. She is a tough cokkie though.



I'm glad that your son is doing so well.

Jennifer - posted on 08/08/2009

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Hi Geneva! My name is Jennifer and I also have a daughter who was born with TOF. Ayanna is 4 1/2 now and doing fantastic. Ayanna received her TOF repair at 7months and this past March she went in for a second precedure for a heart cath for blockage. Ayanna was born with a sort of rare case of TOF because she also has absent valve syndrome. She will need valve replacment when she is much older. I know what you have gone through or going through. It is a lifetime daily chore to care for a child with this condition. I am happy to report ayanna's cardiologist has moved her visits from every six month to one year. I hope all is well with your son and wish many more good days for you and your family. Please keep updated on any info you may have,questions or comments. Just let me know how things are coming along!!!!!!!!!!!!

Sandy - posted on 07/31/2009

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Hi, My son is 7 now. He also was born with TOF. To date he has had open heart surgery twice and muliple heart caths. His first surgery was at 8 weeks and the second at 4 years. Currently he is doing great. He just started the second grade and doing everything a typical boy his age does.

Ashley - posted on 07/13/2009

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Hi! My name is Ashley and my first child, Grady was born with TOF. we were told that he would need surgery around one year, but because he was unable to gain enough weight they went ahead and did the surgrey at 7 mons old. during surgrey they also found out that he had a double arortic arch and it was a miracle he was even alive at this point. After 9 hrs in the OR and a month in PICU he got to come home. He is now 3 1/2 years old and doing well!! we still go for yearly visits and we are dealing with speech delays now, but that just seems like a piece of cake compared to the beginning. It is diffanitley a challanging thing to go through but with the right team of doctors and support team it is something that you can go through and defeat. i have found that it has turned me into the strong mother that i am now. Also for anyone that is looking for a great team of doctors , the cardo team at Children's Mercy Hospital in Kansas City Mo is the place to go. They were soo awesome they let you be the parent the whole time and help take care of some of things that you don't even have time to think about when you are in that situation. They were truely a blessing to our family!!

[deleted account]

Quoting sarah:



Quoting Sheona:

Hi

My son is 3mnths old and was born with Tof. They have said they wont operate until he is about 1yr old. Would love to talk to other mums who have perhaps come through the other side.






hi sheona my baby was told the same but at 8 months her body was tellin her she needed the surgery an went in as an emergency. The way they fight back is amazin she was in surgery for 6 hrs an then took into icu i will tell u its scary experience an wen u c ur child with all them wires its not nice but me an my partner, an a lot of ppl hu iv spoke to have said the same, u dnt think about feelings once she was out we ran on adrenalin jus to get her beta. her ventilator was out an she was bk on he ward within 24 hrs an each day more wires came out an then finally the drainswhich is nothin to worry abou they jus drain any excess blood. we were home on the 5th day of her surgery!!! They say it takes 6 weeks for recovery an u have to pik them up like a new born baby but 8 weeks gone our baby is jus so different shes pink n warm all the time an we are now very tired as she is so active an only 10 motnhs old! The scar aswel is not tha bad bethanys has already nearly faded an the memory of bein in hospital for me has jus gone, if u need to ask anythin else as she has only jus recently had it dont hesitate to ask me 



 



 



Hi Sarah



 



Thank you well Dylan is now 4mnths old and has to have a shunt his heart is not strong enough for a full repair and he is getting bluer although he is not an emergency he does need help to keep him stable.



 



At the moment the stress of Dylans condition is putting alot of strain on my marriage my Husband asked me to leave yesterday and then begged me to stay when i started packing mine and the boys things.



 



Today i feel like there is no light at the end and still consider leaving him.



Sheona





 

[deleted account]

Quoting sarah:



Quoting Sheona:

Hi

My son is 3mnths old and was born with Tof. They have said they wont operate until he is about 1yr old. Would love to talk to other mums who have perhaps come through the other side.






hi sheona my baby was told the same but at 8 months her body was tellin her she needed the surgery an went in as an emergency. The way they fight back is amazin she was in surgery for 6 hrs an then took into icu i will tell u its scary experience an wen u c ur child with all them wires its not nice but me an my partner, an a lot of ppl hu iv spoke to have said the same, u dnt think about feelings once she was out we ran on adrenalin jus to get her beta. her ventilator was out an she was bk on he ward within 24 hrs an each day more wires came out an then finally the drainswhich is nothin to worry abou they jus drain any excess blood. we were home on the 5th day of her surgery!!! They say it takes 6 weeks for recovery an u have to pik them up like a new born baby but 8 weeks gone our baby is jus so different shes pink n warm all the time an we are now very tired as she is so active an only 10 motnhs old! The scar aswel is not tha bad bethanys has already nearly faded an the memory of bein in hospital for me has jus gone, if u need to ask anythin else as she has only jus recently had it dont hesitate to ask me 



 



 



Hi Sarah



 



Thank you well Dylan is now 4mnths old and has to have a shunt his heart is not strong enough for a full repair and he is getting bluer although he is not an emergency he does need help to keep him stable.



 



At the moment the stress of Dylans condition is putting alot of strain on my marriage my Husband asked me to leave yesterday and then begged me to stay when i started packing mine and the boys things.



 



Today i feel like there is no light at the end and still consider leaving him.



Sheona





 

Sarah - posted on 05/11/2009

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Quoting Sheona:

Hi

My son is 3mnths old and was born with Tof. They have said they wont operate until he is about 1yr old. Would love to talk to other mums who have perhaps come through the other side.



hi sheona my baby was told the same but at 8 months her body was tellin her she needed the surgery an went in as an emergency. The way they fight back is amazin she was in surgery for 6 hrs an then took into icu i will tell u its scary experience an wen u c ur child with all them wires its not nice but me an my partner, an a lot of ppl hu iv spoke to have said the same, u dnt think about feelings once she was out we ran on adrenalin jus to get her beta. her ventilator was out an she was bk on he ward within 24 hrs an each day more wires came out an then finally the drainswhich is nothin to worry abou they jus drain any excess blood. we were home on the 5th day of her surgery!!! They say it takes 6 weeks for recovery an u have to pik them up like a new born baby but 8 weeks gone our baby is jus so different shes pink n warm all the time an we are now very tired as she is so active an only 10 motnhs old! The scar aswel is not tha bad bethanys has already nearly faded an the memory of bein in hospital for me has jus gone, if u need to ask anythin else as she has only jus recently had it dont hesitate to ask me 

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Hi



My son is 3mnths old and was born with Tof. They have said they wont operate until he is about 1yr old. Would love to talk to other mums who have perhaps come through the other side.

Kathy - posted on 05/05/2009

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Hello Geneva, My son was born in Sept of 1989 with Tetralogy of Fallot and is turning 20 in September!! :) He had open heart surgery at 6 days old at UCLA, stainless steel stents inserted in both his pulmonary arteries at 3 years old and all of his repairs done in major surgery 2 years ago. He is 6'3" tall and you should see this guy! You can't keep him down, and he eats me out of house and home! I am also here to share stories, and help those parents who may need it. I have never been so blessed with his team of cardiologists. Your son sounds like he was in very good hands. Good luck and God Bless. Kathy

Diane - posted on 02/20/2009

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Hi Geneva, I am a 45 yr. old woman who was born with Tetralogy of Fallot with Pulmomary Artresia. I have had 2 Blalock Shunts & 4 Open Heart Surgeries. I also have an ICD for a Left Ventricular Arrythmia. I kind of know what you are going through. My mom and dad are more in your position of having to watch what I went through. As a kid it didn't faze me much of what I was going through. Only went I got older did it start to affect me. I just was a very lucky girl who lived through something very serious. I was not suppose to live many times, but beat the odds each time. These days fixing Tetralogy is common. When I was born in 1963, not many babies survived. I was the 1st of 13 in the Boston, MA area who survive the surgery I had in 1973. Now I am a mother of two beautiful girls and a grandmother of 2 and 1 more in the way. So I am glad your son is doing well. Never give up hope. My parents never did and neither did I. God Bless!!!!



Ps. You should watch the movie - "Something the Lord Made". It is a movie about how the Blalock shunt came about for blue babies. I am not sure if your son was born a blue baby. It is an awesome movie on how they didn't give up until they found out how to help babies who turned blue from lack of oxygen to the heart. I was a blue baby and had to have two shunts by the time I was 2 yrs old.

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Hi my name is Melody and I have a almost 5 year old son (my angel) his was born with Tet. of Fallot and has had 3 open heart surgeries but a total of 6 heart surgeries all together. Please visit his website at www.caringbridge.org/visit/brendonshadle he has over come so much and as mothers so too have we....

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Hi! Nice to "meet" you! My son also has TOF and had surgery when he was 3 months old to correct it. We are told he likely won't need any more surgeries! He is now a happy and healthy almost-18 month old!

Mary - posted on 02/01/2009

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My daughter has TOF and Pulmonary Artresia. She had patch at 5 days and full repair at 8 months. She still does not have a pulmonary valve. She may have surgery in next couple of years to have one put in. She is 12 and very healthy otherwise. We live in Austin TX and love her cardiologist. His name is Dr. Stuart Rowe. We have seen one other doc in the group, Dr. Patrick Finnigan. we love them both. Their web address is:






cca-austin.com  Check them out if you are willing to make the drive. Or maybe they could refer you to a local doctor. Hope this helps.



Jerilyn - posted on 02/01/2009

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I don't even live in the US sorry... I am up in Canada. I wish I could help.. but your health care system is so different down there to ours... I could not imagine having to find a specialist, we automatically get one assigned to us... it is bad enough when I was having issues finding a good family doctor... I am glad that I finally found one of those.

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Dylan had Tet spells all the time prior to surgery. He was on oxygen for a month before the surgery. We had to wait until he got up to 10 lbs before they would take him into the OR. Since then Dylan has been fine expect the hands and feet turning blue. His old cardiologist told us that Down syndrome kids have smaller capularies to the arms and legs and not to worry about the blueness. However, I am a member of several Down syndrome groups and all of the kids with DS and TOF have never turned blue in the feet or hands since surgery. So, why is my kiddo? Matthew and I just can't trust this doctor anymore and we have a list of new doctors we are calling to get appointments. Does anyone live in the Texas, DFW area or know of any good cardiologist in the DFW area? I am willing to drive to Houston which is about 4 hours away for a good doctor. I just want answers and a good doctor.

Jerilyn - posted on 02/01/2009

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Dominic before his surgery always had ice cold feet... but they only time they ever went blue was when I was BF and he was a new born... but other then that I have never seen them go blue. When you do find a new cardiologist make sure they do look into to that. Because from what I remember when Dominic was born they said kids with TOF are more likely to have blue spells when they get upset... but that is because the blood flow is not getting any fresh oxygenated blood to the body because the muscle around the heart is pinching the already narrowed pulmonary artery, so most of the blood is going though the VSD opening and not going to the lungs... but really if you son had had his surgery done... that should not happen... I really would get it looked at.

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Hi! My name is Nicole, our son Dylan was born with Down syndrome and Tertralogy of Fallot. He had surgery when he was 4 months old. His pulmonary valve had to be removed, but so far it looks like it may not have to be replaced. Also, Dylan had to have his thorastic duct ligated 27 days after surgery because the duct got knicked, torn, or cut during surgery.



Dylan is now 3 and doing very well. However, we are concerned because his hands and feet turn blue when holding a cup of water and we are looking for a new cardiologist. Does anyone have the same experience of blue hands or feet?



We are not happy with our cardiologist because he never told us about Dylan having a double Morgagni's hernia. This means that Dylan abdomen was never attached to his chest wall from one side of the rib cage to the other side of the rib cage. Every time Dylan took a breath his intestines were getting higher and higher up in heart and lung area. The cardiologist never even told our peditrician! We found out by mistake and Dylan went into emergancy surgery. At the time of surgery the colon was on top of Dylan's heart, small instestines were on the left lung causing blood loss to the lung and it to collasp, and the liver was on the right lung causing it to collasp. We were shocked, scared, etc. but Dylan pulled through and was home in 2 days!



Everything that we have been through and have learn my husband has returned to school this semester to finish his last couple of science classes needed to attend medical school.



Dylan is our 4th child of 6. We have 6 wonderul kids. Caitlin 6, Marcella 5, Volker 4, Dylan 3, and identical twins Madeline & Bridgette 1.



I am just happy that I have found you guys so I have someone that understands what I am talking about! Thanks for creating this group!

Jerilyn - posted on 02/01/2009

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Well that is why they held my son off for a while is because his levels were always very good. But where I live they do try to go the surgery around the age of six months old... but if they can hold it off and put children that need the surgery just little bit more then he did I though that it was okay. But I do also understand about that you want your child to be better and put this huge surgery behind you... I was there once too... waiting for that phone call. Plus the older she is the easier it is to do the surgery on her too. Hang in there you will soon get this behind you too

Sarah - posted on 02/01/2009

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My daughter has fallots shes now nearly 7 months and so far has had no surgery or anything else she has regular check ups every two months and we were told that she would have surgery when she is one but then recently there saying they will leave her until her oxygen levels start droppin am unsure wats better

Jerilyn - posted on 01/31/2009

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Well I have met a few people on line that their child was only born with Tetralogy of fallot... but I have a cousin who working in a NICU in a major center and she has told me that the most common thing she sees with TOF is cleft lip and or pallet. But I have met more women on line with children born with this condition then I have where I live. So far I am the only one that I know about... I did hear while in the NICU when Dominic was first born that there has been children go though there with that condition, but with the group I belong to I have never met one yet. But it is nice to meet other family that have been though the same thing.

Geneva - posted on 01/31/2009

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Good luck with the future surgeries. My son is autistic as well as the heart defect, it never seems that Tet comes alone. I have a really good friend whose son had cleft lip, he is now seven and has had a few surgeries but his speech is good and they did amazing work. Medical advances amaze me everyday.

Jerilyn - posted on 01/30/2009

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My oldest son was born with tetralogy of fallot and he is now going to be 3 year old on the 13th. He only had one surgery done when he was almost 8 months, but did also have a heart cath done when he was 3 months old. We were also told by the cardiologist this year that it looks like he will not need any more surgery... so we were very thrilled to hear that. But he was also born with a cleft lip that has been repaired, but will need touch ups done as he gets older, he might also need a lot of dental work done too... he has one tooth that has completely came in sideways where his cleft is... so we are thinking that there is more too it... we see our plastic surgeon again in the fall.

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