Heart defect (Fallot's Tetralogy) found in 20 week scan - am completely devastated

i am a complete wreck....

we had our 20 week scan this morning for our 2nd child and there was a major problem with his/her heart - the doctor said it is likely to be a congenital heart defect, either Fallot's Tetralogy or Pulmonary Artery Stenosis.

he recommended an amino (booked in for Friday) to check if there is another associated chromosomal disorder (like Downes etc) as heart defects are often linked with other major disorders. we then have to go see a cardiologist to do a more detailed scan to work out the exact problem and to get more specific information - this will be in about a week or two.

i havent stopped crying since. i'm a wreck. i've been on the internet all morning finding out info and it just makes me more and more depressed. the baby will need open heart surgery soon after birth, this is a major issue, there seems to be lots of success with the operation, but each child is different and can have different levels of severity.

a termination was mentioned as an option..... but how can we decide if that is the right course of action?

has anyone been through this? does your child have this disorder? i need advice and support and help.... and lots of panadol because i currently have a huge headache!

help :cry:

Big hugs Leanne. This is so awful for you. I'm afraid I can't give you any info, but I can tell you that you are in my thoughts and prayers and I hope the news gets better for you. In the meantime, please make sure you look after yourself. Drink plenty of water to make up for all that crying. I really hope it's not as bad as they think. Things that seem bad can have happy endings - a little boy we know was born at 24 weeks and is turning 2 next month. He is a normal child doing everything he should be - and he wasn't expected to live, espeically not without mental or physcial disabilites. I hope you have a happy ending too. Big hugs again sweetie.

Leanne firstly big :hug: for you. I understand completely the shock and heartache and grief you must be feeling. My little one was diagnosed with left ventricle hyplasia (sp?) and pulmonary artery stenosis. His case was considered very severe, with very little chance of survival. He also had major VSDs and ASDs (holes in his heart). We too were offered the option of termination. We declined. He had an operation to widen his pulmonary artery on day 3 after he was born, and had open heart surgery to repair the holes when he was 3 months old. He is now a healthy and happy almost-5 year old, and I thank God for each and every precious day I get to spend with him.

It's important to allow yourself to feel the shock, denial, anger, and other feelings associated with news like this, and talk about how you're feeling with your partner. As you think of questions, write them down so you can take your list to the cardiologist when you have your scan (often we tend to forget stuff when we're under a bit of stress).

I'd be happy to talk more about my experiences if you'd like. All the best Leanne.

Leanne, I had my 20 weeks scan and was told my baby could have D/S. All I can say is to get all the tests done first so you know what you are dealing with. Time will drag and you will cry alot more, but things may not be as bad as they say. They are just getting you equiped for the worst that may happen.

Just hang on to the hope you have, take a breath and realize its not over. I have 2 friends whos had babies with heart problems and they had to have a couple of operations. Both kids are just like any other kids when you see them, except for the scar over their heart.

I really hope you the best.

xxxx

thank you all for your messages. i am still in shock, combined with depression. :(

my DH is wonderful and we have been talking all day about it, and our list of questions for the cardiologist has now extended to two pages.... and we're still going. and my best friend has been a pillar of support too.

we of course need to go through the relevant tests over the next few weeks and gather as much information as possible in order to make the right decision. but who knows if it will be the right one? and how do i go on with 'normal' life in the meantime?

i'd love to hear any more stories from those out there.... success stories or not, i need to hear them all.

Mistyfying - does your little boy have any ongoing problems?? does he need medication or any future operations? and you mentioned his defect was considered severe - could the u/s scans with the experts tell you this, the severity?

Hi Leanne

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Mistyfying - does your little boy have any ongoing problems?? does he need medication or any future operations? and you mentioned his defect was considered severe - could the u/s scans with the experts tell you this, the severity?

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My son has a paralysed vocal cord from the first operation. It hangs in his airway and vibrates when he gets puffed (and makes a heavy breathing noise). So far it hasn't impeded his oxygen intake or anything, or his speech as his false vocal cord has compensated. He visits an ENT specialist once a year to monitor this (he can have an op to tie the cord back if it starts to impact on him). He visits the cardiologist once a year to check the repairs made to his heart. There are no issues with the repairs of the holes, but they're monitoring the narrowed artery very carefully as they repaired it with a synthetic material and if his body doesn't compensate and expand the artery at the "normal" growth rate, that would have to be re-operated on at some point. So far, so good with that.

He doesn't have any medication, but will have to have antibiotics should he ever need dental surgery.

The u/s experts can't tell you with 100% accuracy how severe a baby's condition is (my son's condition was only truly seen once his circulation started to work when he started to breathe air). In fact, they were obviously very concerned about the left heart syndrome, but not at all worried about the "slight heart murmers caused by tiny holes". In actual fact, the left heart syndrome was completely rectified by the time they did a subsequent scan, and the VSDs were far more severe than they had anticipated. Hence the basis of my claim they cannot tell 100% how severe a baby's condition is.

Hope that helps, Leanne.

Hi Leanne,

Just wanted to let you know you're in my prayers! I wish you all the best and loads of support in this difficult time!

Hugs!

My prayers and thoughts are with you also through this hard and very emotional time. I can't offer any advice about the topic, and will admit I'm not overly looking forward to my 19 wk scan in just less than three weeks. I'm glad you have lots of support from family and friends, and of course us at Belly Belly to help you through this terrible time. *Hugz*.

How many other scans have you had prior to this? Did you have the nucheal (sic) fold u/s? If so, what were the results? Does the Dr seem to think Downs could be linked to this?

thanks Christine for your further info. sounds like there might be lots of side-effects from major heart operations like your son's vocal chord that just cant be predicted... thats what i keep reading. its just whether they are major or minor problems. is your son normal in every other way? ie, developmentally? physically?

our biggest decision over the next few weeks is whether to continue with the pregnancy or not.... and i just dont know how we are going to make that decision.... we're very 'scientific' so i guess we'll go with the stats. our biggest concern is the baby's quality of life, if it survives the operations.

Leesa, our downes syndrome test at 12 weeks came back good for my age - 1 in 2200. and everything else in the scan at 20 weeks looked normal. but i guess the amnio today will tell us if anything else is wrong.

i still cant believe this is happening, it is surreal :(

Hugs Leanne. What a shock for you. I can't offer any advice but I don't know if it would be worth contacting "heart kids" in your state once you know all the info. I am sure that you are not the only one to be faced with this and there must be parents out there who have 'been there done that'. Keep writing your questions down and talking to your DP and friends. Take time to let it sink in. It is always harder dealing with the unknown and 'what-ifs'. The hardest thing is that at this point they cannot really tell with 100% accuracy how 'bad' it will be. I guess hang in there, get the info and make a decision on what is best for you and your hubby.

hi leanne,

i am sorry to hear your news, i havent had experience with it myself but a close friend has, is it possible to email you privately to tell you her story ? her son is now nearly 11 months old so it all happened fairly recently

Melinda

Hi Leanne, so sorry to hear your news. My thoughts and prayers are with you.
It does sound from the posts here that some babies have had successful ops, and that's promising.
But of course the decision is your and DH's, and am wishing you all the best with lots of love. xoxoox

Leanne,

i was just wondering how you went with your amnio friday and if you had anymore news about the baby's condition ?

my friend with the 11 month old son who has pulmonary artery stenosis and vsd and has had 2 open heart surgies done since his birth is more than happy to chat to you by email if you want to

Melinda

Leanne ... in answer to your questions, my son is a very bright boy and he has no physical or developmental disabilities.

I met another family at a party on Sunday who had a teenager who had a VSD repair done when he was 14 months old. He looked great, and was organising all the little kids for a backyard game of soccer.

Leanne - I hope your amnio went ok. Have been thinking about you.

hi all

thanks so much for your messages and your thoughts/prayers.

we had our amnio test last friday afternoon and the test went fine, no complications. and the initial results came back yesterday and they are clear - there's no other chromosomal problem (like Downes, etc), it's "just" a heart problem. there's still some secondary tests to come back, but so far the amnio looks fine.

as of this morning, we were still waiting to get in to see a cardio specialist - as the condition needs to be confirmed (the ultrasound doctor is pretty sure it is Tetralogy of Fallot though). but the public system is booked out until 26 Oct - the pain of waiting and not knowing is just unbearable. but then our ultrasound doctor and our OB searched for a private consultation and luckily we were able to get in to see someone from the Monash Medical Centre this Thursday afternoon. it may cost us a small fortune, but right now we dont care about money, we just need to know. i dont think i could go through another week of not knowing, like this past week. :(

so i guess we wait until thursday and see what they have to say. from what i've read, i'm not sure they will be able to tell us the severity of the condition (assuming it is Tetralogy of Fallot), but unfortunately the severity is of course linked to their prognosis.... the worse the condition, the less likely they are able to survive or have a good quality of life.

so depending on what they tell us on thursday, my DH and i will have to make the heart wrenching decision about whether to continue the pregnancy or not.... how the hell can anyone make that decision?? either way will be massive heartache....

Christine - thats great that your little boy is normal and healthy. And Melinda - it would be good if your friend could email me with her story. thank you both

i'm still a complete mess - i just cant stop thinking about it and its draining me. why is this happening to us? i keep thinking about what i'd be doing/thinking if everything was fine and the baby was ok - i'd be excited and thinking about next year... and the baby is kicking so much now, normally i would have grabbed my husband's hands so he could feel... but i dont want him to touch my belly or see it. i dont even want to acknowledge it myself.... i'm so scared that if we continue with the pregnancy that i will not allow myself to bond and that this depression that i've been feeling this past week will just continue for the next 19 weeks and beyond.....

life really does suck sometimes.

:hug: I will be thinking of you

leanne, will be thinking of you Thursday afternoon.
lots of love

Leanne,

are you able to post your email address so my friend can contact you or is there some way to access it through belly belly

Melinda

sure, it's easytoiger@primusonline.com.au

thanks

hi all

well we saw the specialist last thursday and he diagnosed a different defect than originally thought - although equally as bad, but more rare. he diagnosed "Truncus Arteriosus" (instead of two arteries (aorta and pulmonary artery) there is only one, so oxygenated and deoxygenated blood mix) and a large VSD (hole in the heart). apparently, TA occurs in 1 birth out of 10,000 so quite rare - lucky us. it will involve a minimum of 3 major open heart surgeries; the first between the age of 2 - 6 weeks, then again at 3-5 years and again at puberty (the later surgeries to replace a valve that does not grow with the child).

we spoke with the specialist again on friday afternoon, to go over it again in more detail and to ask our list of 1000 questions. we went home feeling really negative and horrible and still not knowing what we were going to do. but something weird happened - we had a good night sleept and woke up on saturday morning and we both felt that we wanted to keep the baby and fight. it was strange because we were leaning towards a termination the night before. and once we had made the decision to continue, we both feel almost normal again! and much more positive and happy. there is going to be a huge road ahead of us, especially in the first few weeks after the baby is born. it will be heartbreaking to watch our baby go through these surgeries, but we will just have to hope and pray for the best.

so fingers crossed everyone!! my job over the next few months is to fatten up this little thing inside me, to make it big and strong for when it enters the world in late Feb. so i better go and eat! :)

leanne, sorry to hear that it's a rare condition but really glad to hear of your decision.
I'm sure bub will grow up all right, big and strong when he/she has wonderful loving parents like you. I think you will all do all right.
I remember about 6 years ago, a colleague's bub had a heart condition, I dont know which one it was, but had to have a surgery when he was born and another couple of years later. Earlier this year, another friend told me that the bub is doing really well!!
xox

Just wanted to let you know I am thinking of you. I thought I had was scared when I found out Bri had a heart murmer when she was 8 weeks old. She didn't need surgery or anything major, but it was still a scary thing to go through. Have faith. I'm sure all will be OK.

Leanne I'm so glad you have a sense of peace about your direction now. Your determination and love are going to give this little bubs a good start :hug:

hi Leanne,

i just wanted to check you got an email from my friend, she said she had emailed you last week but wasn't sure if you got it or not ?

yes, i did receive your friend's email and i replied this week but havent heard back again yet. so she didn't receive my email? maybe i should send it again? thank you so much for passing on my details to her, it is so good to talk to someone who has gone through something similar.

Leanne - I am sorry to hear the diagnosis wasn't so good, but it is great to hear you and your partner were able to make a decision that you are both so at peace with. It will be a long road a head, but with the support of your family, friends and people on here, you'll get through. Take care of yourself and enjoy this time watching your belly grow and move, knowing you are giving it the best start in life!

Good Luck Leanne
Your positive thinking will help your bubba also!!

well i've slipped back into depression today.... we saw our OB this morning and he has said that an elective c/s is the best way to go for this baby (i had an emergency c/s with our first child, and was hoping for a VBAC for this baby - i even sought out a OB who is well known for his pro-VBAC reputation and extremely low c/s rate). sigh, i feel terrible. the only reason for an elective c/s is that the paediatric cardiologists work 9am-5pm monday to fridays, hence just in case the baby needs emergency care at the very start, they need for it to be born at a convenient time. i know it is best for the baby but i still havent come to terms with the feelings of failure from my first c/s. and if we have any more kids, it will have to be another c/s. it is depressing to know that i will never in my life experience a natural birth

and add to this that i found out today that our private health insurance will not cover the baby as it has a congenital condition - there is a 12 month waiting period. ARGHH

i'm so sick of bad news!!!!! but as my hubby said - we have chosen the path with more complications, so we're just going to have to get used to them

i am not liking the world right now :(

oh and add to my more bad news - we had another appointment with a different cardio specialist last friday (as a 'second opinion') and he thought it could be one of 3 conditions - Truncus, Fallot's or pulmonary artresia (all are very similar and are hard to distinguish in the womb, you really need to wait until the baby comes out to tell for sure). but he said that the prognosis highly depends on the baby's pulmonary system - which he cannot see or distinguish at the moment - if there is somewhat of a good system, the baby has good outcomes (90-95% chance of having a normal life), but if there is not a good system then the outcome is very bad (most parents choose not to continue treatment as the baby just has to have operation after operation). we wont know if the baby has a good or bad system until he/she is born..... so i was operating on the idea that it should have a 90-95% chance of a good life - now we're back to a throw of the dice, it could go either way.

i think part of me is rethinking the decision to continue.... although my DH is fine with continuing... i'm just so very sick of all this bad news and uncertainty. i cant stop crying today. :(

Leanne i am so sorry you are going through all this heartache and not knowing what to do.
I just want to send you a big :hug:

:hugs: I have no words just a :hug:

Hi Leanne,

Just wanted to let you know i am thinking of you and your family at this time... Best wishes.
I also wanted to say that i was born with a VSD and a murmor. I didnt have an operation until i was 8 years, and i am currently pregnant with bubba #4. I do have to have antibiotics whilst in labour and when i visit the dentist, but apart from that i lead a normal life..
I am happy that you guys are sticking with this bubba, Just think, he/she will love you even more for beleiving in him/her.
Hugs,
Jenni