Heart surgery for my little girl

[triciapearce]

Hi everyone,

Sorry, not posted for a long time, but would just like to get some advise or answers from anyone who has experienced this terrifying issue before.
My 9 month old little girl was diagnosed with a heart murmur at 8 weeks and at 6 months it was believed she had a hole in the heart.
Last Friday she had the scan that would give the difinative answer and not only does she have a hole in the heart (quite a large one) but she has a thin pulmonary artery.
She needs open heart surgery in the next few months and although we were told it's a non emergency procedure and relatively quite common its still a very scary thought that my little girl has to go through such a major thing.
I would just like to find anyone else who has experienced this and I guess reassure myself that everything will be ok.
I have a great partner and we have discussed things but we both seem to end up making each other cry.

Thank-you

Trish

Sorry I cant actually offer any direct experience. My ds has had major surgery at 3 weeks of age though and may need more (he has a bowel disorder). All I can say is to take each day at a time, do as much research and networking with people in similar situations as possible. We found it was a real rollercoaster of all is fine in the morning only to have a change in condition by the afternoon and then changing for the good again. I found this extremely harrowing, I felt I couldnt celebrate any good news as bad seemed to follow. Support from your partner is essential, and if you can stay with your baby in the hospital, I didnt let him out of my sight except during the actual surgery. Make sure you write down any questions you have and the answers as the stress can blur your mind and I found it was the only way to remember things. My son's surgery was major and he has come through it remarkably well and even his scarring is healing way better than I could have dreamed. Not sure if any of this has helped but thoughts and prayers going your way.

i have no advice. Just wanted to say that im sorry that you adn your DD have to go through this

x

Thankyou for such quick responses, thought I would be the only one up at this time in the morning. Have been sleeping fine up until now but for some reason things have only just hit home and I have not stopped thinking about it.
Because of this i started doing a bit of research and the worst thing is that most children who have gone through this heart problem(Tetralogy of fallot) have had further complications and more surgery. They seem worse off??!!??
I know every case is different and we may get through this with no problems but all I seem to do is worry that my DD won't make it.
Think that is mainly due to the tiredness so I guess the best thing for me to do now is put some relaxing music on and try get some sleep.

What am I like, I come on here for advice and end up telling myself what to do. :)

Night Night

I can not say much but didn't want to leave your post unresponded. My niece had a couple of heart surgeries, she is fine now, she doesn't even remember them taking place (she decided the hospital was a "Children Hotel" :)).

Hiya Trish,

My daughter had open heart surgery for a VSD and a PDA when she was 7 weeks old. She was very poorly prior to it (she was still 1 lb under her birthweight for instance, and her breathing was more like panting). Because she was so small still she had a few complications but she did get over it all eventually.

She was in hospital for 6 weeks but that was highly unusual for her kind of problems - most other babies seemed to be in and out within a couple of weeks.

My dd is now 5 and her heart is just as good as a normal one. She's not due to see the cardiologist again until she's 8 and will probably be discharged completely then.

It a horrible time nevertheless and extremely stressful. Have you joined Heartline yet? They are very good, however, the stories in the magazine are quite often about children with highly complex heart defects requiring many OH surgeries, so bear that in mind as it can be a bit depressing.

Also, your hospital will probably offer to show you round the ward and the ICU before your dd is admitted - do go, it really helps to be prepared. I also found it helpful to see pictures of babies shortly after OH surgery - seeing my own was much less of a shock as I knew what to expect.

Good luck! There are a few of us on MN so I'm sure you'll get more replies.

HI,
My sister was diagnosed with a hole in her heart in 1973. She had heart surgery at the age of 3 and is now a strapping 33 year old with no problems!!
The surgery she had at the age of 3 is the same operation they now perform on young babies - that is how much medicine has advanced.
I know how desparate you and your partner must be feeling, just have faith in the doctors, surgeons and nursing staff, and in the restorative powers of your DD. I can recall my sister riding a bike in the ward 5 days after surgery,children recover amazingly quickly!!
Love to you all

Hi. I have a 3 month old baby and she was diagnosed with a heart defect at 12 days old. Another mumsnetter pointed me in the direction of \link{www.heartline.org.uk\Heartline}. They offer support for families of children with heart disorders.

Tricia - hi. Sorry to hear about your little girl. My dd has a significant heart condition, along with some other stuff. She had surgery as a baby but isn't repaired. It's a scary time for you and your dp but and it's a fact that they handle things differently.

The internet is great for information but can often be frightening. The site that Cat has linked to is brill and there are a few mums there with children with TOF. Pay us a visit, you'll be made most welcome

Which hospital are looking after you?

tricia,it must be very worrying for you.
I've been researching heart problems for a feature I am doing and have been speaking to Jenna
onm the helpline number
\link{http://www.childrens-heart-fed.org.uk\here}
She is really lovely, and will talk you through all your concerns.
hth x

Tricia
My ds has had a number of surgeries (not for the heart though), the first when he was 10 weeks and second at 10 months. The brilliant thing is that as babies they just don't remember it, so whilst it's rotten for you, it won't affect your little one long term - other than in positive ways

Hi Tricia,

My ds's situation is fairy similar to yours. He was found to have a loud heart murmur at birth. Due to lots of other problems he wasn't followed up at 6 weeks like he was supposed to be, so his heart defects were not picked up and diagnosed until he was 9 months old. Unfortunately, by this time, he was very poorly indeed and we didn't have time to put the surgery off. Just a week later he underwent 4 hours of open heart surgery. He is not completely "fixed", but his condition but he is stable. He is now 6 days away from his 2nd birthday, a day I know that I would not be seeing if not for his surgery. He is doing well and we are not expecting any more intervention (please, please, please!) until he reaches his teens.

I know that this is a scary time for you and your family. In a way, I had it easier as I had no time to contemplate what was going to happen to my son. If it make you feel better, ds was only in hospital for 9 days total, 3 of those days were to start meds to lower his BP. He was in PICU for 48 hours due to a small hiccup where he had to be re-intubated for another 24 hours (he had a chest infection), in HDU for 12 hours and went home 6 days post op! The recovery in such young children is truely amazing

I see the other's have pointed you to heartline & the children's heart federation (Jenna, on the helpline, is worth her weight in gold!) You will get lots of help & support.

Which hospital will you dd be treated at?

Wishing you lots of luck and some hugs. I know what you are going through.

Hi everyone,

Thanks for the great responses and support.
During my night of sleeplessness i discovered Heartline and found it very helpful.

Fortunately we will be looked after at Great Ormond Street hospital so I feel reassured dd is at the best place for surgery.

We are now just waiting for the appointment letter to arrive which is the frustrating part, also dp and i are due to get married in September so I really hope it is before then (or i guess just after it would be ok)

I shouldn't worry too much, dd looks like any normal child her age and is gaining weight really well, and she has never had any attacks of blueness or breathlessness.

It's nice to hear from people who have been through something similar, although a shame that it is something like this that associates us all.

Will keep you posted

Trish

Tricia (is Pearce your surname? if so we have that it common) - glad to hear that your little girl is remaining well

The waiting is difficult but you will be well looked after at Gosh, I'm sure. Stay in touch and congratulations on the wedding!

Hi triciapearce, i know it was a long time ago but wonder if you could please share your experiences so far with your daughter, as my son who is 6 months now and has mild form of TOF. Found out loud murmur at 8 week’s GP appointment and confirmed by specialist from Southampton hospital as mild form of TOF(Narrow valves and large VSD). My son has to undergo open heart surgery in few months time. He has to get patch to close the hole and mass to be removed to widen the narrow valve. He is also growing normally at 25 percentile with no blue spells and breathing difficulties. Could you please share you experiences how did the operation go for your dd and how is she doing post operation?

Many thanks in advance.