Unborn baby diagnosed with complex heart problems - advice needed?

Catherine - posted on 04/13/2011 ( 14 moms have responded )

14

0

0

Hi everyone,
My husband and I went for our 20 weeks scan last week & after two follow-up scans found out that she has the following heart problems: a large and mid muscular ventricular septal defect, a moderately severe aortic valve stenosis & a 2:1 block - giving her a low heart rate of only 76bpm. Should things not deteriorate & she survives till birth, we have been told she can have a balloon inserted into her aorta to open it up & that the holes in her heart can be filled - should her heart be unable to continue pumping due to the conduction problem then she can also have a baby pacemaker.. As this is probably the best we can hope for I wondered if there was anyone who had experienced similar & could perhaps help us understand the level of medical intervention our baby will need after birth & beyond? Does anyone have any idea of the risks involved in these procedures & will she be able to go on & live a 'normal life' with a normal life expectancy? Any help, guidance or advice would be much appreciated as we are pretty anxious about the future to say the least..
Catherine x

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

14 Comments

View replies by

Mantha - posted on 01/03/2013

1

0

0

My daughter has a very complex heart condition to
Her heart is on the right side an is back to front
She is single ventrical plus a lot more wrong .
She had open heart surgery when she was 2 days old .
We spent a month in hospital and she pulled through after then at 4 months
Another opp but she is now home an happy she will be
Able to lead a normall life but they will be a lot that she
Can not do to its a very hard thing to go through as a
Parent I felt very selfish sometimes but its all worth it in the
End to see them smile an just even look at u. doctors have told my my kaycie's heart will
Fail by the time she is 15 an she will need a new hear
A baby with a complexed heart condition will never
Have a full life expectancey but as I say can lead a normal
Life so don't give up be strong an life everyday count
Live life to the full xxx sam from england with kaycie
To major hear surgarys an still strong as enythink

Catherine - posted on 04/26/2011

14

0

0

Thanks Chanel :-) I have loads of support & so far I'm really impressed with the care I've been getting - something I'll ensure stays consistent! x

Chanel - posted on 04/26/2011

8

0

1

i found out at 20 weeks my daughter had a CHD as well. Hers was one of the most rare and it seemed like things were hopeless....luckily that was all in my head. the more research i did and the more doctors i met the more control i felt i had. i honestly can say in this situation knowlege is power. make sure you advocate for yourself and unborn baby. doctor shop. decide where you want your care. be sure to make and keep appointments. any demand you have needs to be met and you need to feel safe and secure with the people caring for you. my daughter is 10 months old and doing great. she has had 2 open heart surgeries and i made sure to know everything i could about anything she was going through. nothing is certain and it is important to know you are not alone. do not let anyone bring you down in these hard times. surround yourself with positive and supportive people.

Heidi - posted on 04/23/2011

64

71

16

I found out the hard way that there are times that you're dying to get off of it, even if just for a little while. But you know what? The view from the top of the hill is magnificent!!!! You just have to train yourself to open your eyes and take it all in, instead of waiting for the next drop. :)

Catherine - posted on 04/23/2011

14

0

0

What a lovely post :-) Thanx so much for sharing it with me - fingers crossed this rollercoaster is on it's way up!! ;-D x

Heidi - posted on 04/23/2011

64

71

16

Catherine, I felt the same way.. I wrote a post about it....
"Here it is almost 8 pm the night before the day I have been waiting 39 weeks for, the night before our baby girl's birthday! I probably should be sleeping (my hubby is) but I find that so many thoughts are running through my head and as much as I have been looking forward to this day for so long, I am also finding that I am equally enjoying this last night of having her safe and sound and kicking around inside me. So many unknowns face us with the coming day. With her safe inside me, I can protect her and know without a doubt that she's safe. All I can do when the sun comes up is put her in God's capable hands and deal with whatever comes our way.

this pregnancy has been a true test of faith, a virtual roller coaster of highs and lows. I find myself remembering again and again the grandmother from the movie "Parenthood" talking about this very thing..."I always wanted to go again. You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled all together! Some didn't like it. They went on the merry-go-round. That just goes around. Nothing. I like the roller coaster. You get more out of it". This has definitely been the ride of my life!

For someone who has been told again and again over the last two years that I will never have another baby, and someone who had given up that particular hope too, the day that I found out I was pregnant was unbelievable. I took a total of 4 tests just to make sure. Then came the blood tests that said my progesterone levels were too low and the 6 long weeks of Herculean doses of medicine that made me feel like poop to make sure that I didn't miscarry. The first time that I saw little Lydia (before we knew for sure she was a Lydia).. such a little bean but with a heart beating so steady and strong and I remember crying with sheer joy. Smooth sailing for quite a while, ultrasounds and tests showing everything we would expect to see. The dr telling John that it was a 70-30 percent chance the baby was a boy...haha and the friendly arguments that ensued for the next six weeks until we got to the next one and found out she was a girl! Ahhhhh ecstasy! :) Then the blood tests that came back elevated for Downs, and the next one that came back normal, and the ultrasound that showed something wrong with her little heart. Such joy turned to such fear and heartache. The week from Hell. Waiting on amnio results, waiting to talk to a specialist, waiting to know for sure this precious girl's fate all while dealing with a broken heart of my own. the confirmation of Down's syndrome shouldn't have come as a surprise but still it did, just another kick during a week where we were so low. But the doctors at Riley and IU were optimistic and with time, we adjusted our way of thinking and I personally know that I become overwhelmed with awe that God had enough faith in me as a mother to bless me with this tiny miracle.

During the last few months, I have been blessed to watch my tiny bean grow into a precious baby, with a personality all her own that continually blows my mind. I have become well versed in the medical aspects of her heart condition, and have watched her constantly surpassing each and every doctors expectations.
I don't know what tomorrow holds, or next week, or next month. But I do know that without a doubt, life will never be dull with her around. :) I'm scared, unsure, nervous, excited and overjoyed all at the same time, just like the roller coaster. But I know for a fact that whatever the future holds, I can't wait for the ride. I love you Lydia, and I can't wait to kiss your sweet little face tomorrow!"

Catherine - posted on 04/23/2011

14

0

0

Thanx Sylvia :-) Life has become a rollercoaster, but watching my belly move makes me realise I'm a mummy already & there's no better encouragement to keep positive :-) x

Heidi - posted on 04/15/2011

64

71

16

It would be easy to be swallowed up by sadness. I've been there too. I cried so much while I was pregnant, and the tears just kept going after she was born for a little while. But I made a conscious decision while I was pregnant that the doctors only got to see her in action for brief periods of time. I knew her better than any of them because she was always with me. I was told so many heartbreaking things, but I came to a place where I decided that although she has DS too, she was stronger than anyone but me gave her credit for. I will continue to pray for you to have strength and that you continue to keep a hopeful attitude!

Catherine - posted on 04/15/2011

14

0

0

Thanks very much Heidi - I certainly do love her and pray for her regularly though I'm almost scared to attach to her too much as I'm finding myself trying to prepare to say goodbye to her also?? Despite this I get the impression that people are concerned that I'm being overly hopeful but I don't really know how else to be without letting myself get swallowed up by sorrow - something I'm trying to stay strong to avoid for the sake of my unborn daughter as well as myself! I wish I could just wake up to the day my daughter is born & has pulled through all the surgery, as I feel like I'm in a painful kind of limbo at the moment.. I'm sure many of you felt exactly the same.. I will however continue to try to pick myself up & see the positives as it is people like you who have gotten to the 'other side' and have seen so many positive signs. Thanks so much for your post x

Heidi - posted on 04/14/2011

64

71

16

My daughter is facing open heart surgery in the next few months. My best advice is to pray, love her, and have faith. Listen to what the doctors tell you, and if you don't understand ask questions until you do. But I found that I ran into a lot of doomsday prophesiers in the medical community too. That's not to say that you shouldn't know the worst case scenario and try to prepare for that. But you should also ask for the best case scenario too. Lydia (my daughter) does have a serious defect with her heart but she has been proving the doctors wrong since waaaayyy before she was born. Everything they told us to expect has been wrong. They told us that she would be blue, she would be tiny, she would be in the children's hospital NICU (which is very isolated). She was born pink, weighed in at 7 lbs, and was transferred to the NICU of the hospital I was in within 24 hours. They said she wouldn't gain weight (even that it would take her 6 months to make 10 lbs) and that she would probably eat from a feeding tube until after surgery. She's 3 months old, already weighs over 10 lbs, and is eating bottles like nobody's business. Our doctors say that once she has surgery, her heart will work just like anyone else's and that she will be able to do all the things our other kids can. Any surgery carries risks, especially open heart surgery, but if you get her into a good children's hospital they do the procedure enough that they really can work miracles. Praying for you, and your baby.

Catherine - posted on 04/14/2011

14

0

0

Aww thanks to you both for your reassurances..
Julie - You sound like you went to hell & back yet your story ended on such a hopeful note! I'll try to remember it through the challenges I have ahead. I live in England so presuming you're based elsewhere I hope the technology over here is as good!
Louise - I have a fantastic support network around me & although the doctors have mentioned termination in passing, not one of them have recommended it so that has to be a good sign!?
Thanks again to you both x x x

Louise - posted on 04/14/2011

5,429

69

2296

I think you are going to have a battle on your hands here. You need to listen to the doctors and take advice from them and then just hope and prey that your child has enough energy to fight for life. It is not going to be easy and you need a support network around you to support your emotionally. If the doctors are hopeful at all then believe in them. Medicine is a wonderful thing and miracles do happen. Stay strong and take each day as it comes. x

[deleted account]

Hey Catherine,
What a horrible time you are going through right now. I know how you feel! I was 18 weeks pregnant when my daughter was diagnosed with complex heart conditions. I had to have scans every 2 weeks from then to make sure that everything was "ok". By 5 months pregnant my daughter heart had taken up majority of her chest cavity and had squashed her lungs. They told me that she more than likely wouldn't survive the pregnancy and if she did she wouldn't survive the birth. I had the scans and they continued to moniter her. I was induced at 38.5 weeks, to make sure that I didn't go into labour naturally, as they knew that my baby girl would need a ventilator to keep her alive. My daughter was too weak to have surgery when she was born, and we had to wait till she was 8 months old for her to have surgery. Surgery changed her life! Felicity is now a happy and healthy nearly 7 year old. I guess why I am telling you this is because, Modern medicine and technology saved my daughters life, and the drs will do everything they can to help your little baby. There is no reason that your little baby can not lead a happy normal life. I was told that my daughter wouldn't survive and she runs around like every other kid in the neighbourhood. The one thing i would advise you not to do, is to research your daughters heart problems on the internet. I find all they did for me was confuse me even more than what i already was. What country do you live in? I know there are lots of organisations that help with parents of heart kids.
~Julie~

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms