Routine Growth scan - but have been referred to heart specialist

[Flumpytigger]

Hi,

I was just wondering if anyone had been through the same experience. This pregnancy has been far from easy and I feel like there has been problem after problem.

My story starts with an emergency scan because of a high level of AFP in my blood at 18 weeks. The scan then showed that our baby was 2 weeks behind in his growth and had a bright bowel. We have had routine growth scans since and an amnio to rule the majority of problems out.

He has been growing steadily ever since, but is still 2 weeks behind and his amniotic fluid seemed low, however all problems and abnormalities had been ruled out. We were safe in the knowledge that he was just ickle.

However we went in for our routine growth scan yesterday and the amniotic fluid is at a normal level now; but this has apparently enabled them to get a better view of his heart and they are concerned that his heart appears to be enlarged, positioned at a more acute angle, the aorta appears to wider than anticipated and the right side seems slightly larger than the left.

We have been refered to a fetal heart specialist on Tuesday and I can't believe we have to wait that long! I also can't believe we are going through even more complications, just as my hubby & I thought we could start planning and getting excited.

I'm sorry to have waffled on, but does anyone have any experience/knowledge of this?

Thanks,
H
x

im sorry i dont but i wanted to wish u all the best and hope that everything works out for you. how far gone are you now?? have they said what these findings mte suggest??

xxx

Thanks Bubblebell1.

I am only 24 weeks and 2 days.
The sonographer and the midwives never seem to actually want to commit to what they think the actual diagnosis might be and they have always just told us the problem and refered us to a consultant, or in this case a specialist.

We always walk out of the scan having been bombarded with endless problems, no diagnosis and no potential outcomes!

thats dreadful. and having to wait untl next week too. hopefully someone will come along with some knowledge.

bumping for you

xxx

oh poor you and DH..this pregnancy has been a roller coaster ride hasn;t it? no experience, but just want to say i am sorry you are having a hard time.x

Thanks Lulumama and thank you for being with me since my first 'problem post' at 18 weeks!

I just don't know how to feel anymore, whether to be worried or not. It might sound weird but because it's been so up and down, I just feel numb at the moment

xx

Flumpytigger, you poor thing. I just had to post really to say that I have a son who was diagnosed with a heart condition shortly after birth. We knew nothing of the problems that lay ahead whilst I was pregnant so it was difficult for us to come to terms with. It is brilliant that you are being referred to a specialist so quickly. Ours really knew his stuff and was able to tell us so much with my subsequent pgs which were thankfully both fine. I'm not sure what sort of questions you have but I have a little experience of fetal heart specialists both before and after birth and would be happy to try and help answer anything.

flumpy - sorry to hear that youre going thru a yucky time...good luck for Tuesday xxx

flumpy where are you having your scan? i had mine at guys hospital in london. they are excellant. IF there is a problem (and i admit to reading your post with my hand over my mouth trying not to sob) then its bst they know before birth. there is a heartline group for parents of children with heart problems. i am over there due to dh heart problems and also my eldest has a leaky valve so they wont let me leave lol. they have a pre-natal section

Thanks for your kind thoughts Biglips..

Bagpuss30, I know we are lucky in the fact that if there is something wrong with our little man then it has hopefully been caught early; but I'm just concerned on whether the condition (whatever it may be) is managable. I'm also wondering what the chances are of there being nothing wrong and it's just a false alarm like everything else so far..

He is so active and I feel so well in myself, surely there would be other signs, not just what the sonographers have possibly picked up on or his small size.. I just keep trying to think positively but it's hard.

I just want to know that whatever the problem is that it can be fixed, but I know the only person who can tell me that is the specialist.. I'm just so sick of all this waiting!

Misdee, I am in Manchester and have been refered from Hope in Salford to St Mary's. The specialist and the equipment is meant to be some of the best, so fingers crossed.
Thanks for the link and I will go there now.

I've been holding up ok since thursday & I'm trying to be strong because I know the stress & upset won't do me or flump any good, but I must admit that it's getting harder by the day.

xx

Flumpytigger, I have no advice to give unfortunately, but just wanted to say I feel for you - my pregnancy with ds was such an awful rollercoaster of scan after scan, and like in your case nobody wanted to commit to anything - it was very hard.

Now I have my lovely and beautiful ds sleeping in the next room, he has problems but we are just so lucky to have him.

I really hope for you that you will have a good outcome too.

this happened with our eldest daughter. She was initially diagnosed by the local hospital and then we were referred to London. We found out at our 20 week anomaly scan.

It was actually a relief to have the fetal cardiac scan - we were able to see everything that was going on, we were told exactly what sort of heart defect dd1 had and were then able to prepare for her birth and the surgery that would follow.

Whilst dd1 had a serious heart defect it was operable and the outcome very positive - she is now a strapping healthy 4yo.

The fetal cardiologist we had in London was brilliant. We ended up having two scans with them and he spent a lot of time explaining exactly what was wrong with dd1's heart.

We found it helpful as we had a name and could do some research. It was also helpful in that we were able to tour the local hospital scbu/nicu and everyone was prepared for dd1's birth - it meant she got the best of care right from day one.

we had to wait a week or so before we could be seen by the specialist in London and that waiting was horrible - all sorts of things go round your head. FWIW - the local hospital told us they thought dd1 had a different heart defect to the one she had. Originally they said she had a hypoplastic left heart - very very serious and not always a postive outsome - a lot of surgery needed including transplant at some stage.

Dd1 actually had a complete AVSD - basically no walls between her aorta and her ventricles - two huge holes in her heart - yes very serious but easily repaired with a 95% success rate. We were glad to have the scan and the correct information - a little annoyed with the local hospital - felt perhaps they should not have said anything as they were not 100% sure.

my dd1 underwent 2 open heart surgeries at 8 weeks old - I spent three weeks in london with her but she came through it so well.

she is the one in red

she still has a slightly leaky valve but we have annual cardiac checkups and that is it.

sorry for the long post - hope it helps.

Flumpy, we were at St Mary's too - you may see Mr Gladman, who is excellent IMO.

Another lady I know had him too throughout her pg (I knew her from antenatal classes which was an odd twist of fate as she knew that her dd may have had some problems and I didn't even suspect there was anything wrong with ds). She ended up giving birth in St. Mary's and then after a few days her baby's heart seemed to be OK and they were discharged from Cardiac care . So you may be right, this may end up being a false alarm. What the team at St. Mary's will do is to assess the level of the problem and the best course of action for when your baby is born, then, like my friend, you will be in the best place to have the baby with the best help around you.

My ds1's condition was quite serious (Transposition of the Great Arteries) and required immediate surgery but now, 6 years on, we are in a similar position to Eidsvold and her dd1 and he has an annual check up due to a slightly leaky valve - that's it.

Sorry for the rambling post - I'm not sure I'm being much help , if you need to talk about St. Mary's or Alder Hey (which is where ds1 had his op) then just shout . All the best of luck for Tuesday - I will be thinking of you. xx

Thanks Bagpuss and eidsvold for posting your experiences and they helped me to feel a bit better about everything.

I did actually see Dr Gladman at St Marys this morning and he was very helpful in that he ensured we had all of the information we could possibly need.

Unfortunately the results are not so good.. he has higlighted that our baby has Pulmonary Stenosis/Atresia (narrowed artery to lung) and Ventricular Septal defect (hole in the heart).
At the moment he is ok because he is protected inside me with my body and placenta doing all the work for him. However it will be a different story when he is born.

Apparently depending on how blue he is when he is born will decide what they do next. If he is fairly blue then they will do a shunt operation to bypass lung blockage. If he is not too bad then he will need an op later to fix hole & to put in a tube to join the right side of heart to the lungs (hole can be fixed but only when the blockage to the lung is fixed).

He said that out of 10 babies born 7-8 will survive these problems. However he cannot confirm what their quality of life may be; but they would almost definately have to have further operations throughout later life.

I have had another amnio to rule out a problem with chromosome 22, which apparently isn't checked on the normal amnio I had previously. This will hopefully tell us if the condition is genetic or just 'bad luck' as the Dr called it.

Anyway, we are just beside ourselves and don't know where to go from here. We have been given the options to either continue or to terminate and we are just lost.

The Dr spoke about the termination and the fact that our baby would have to have an injection and then I would take tablets and have him naturally It's sounds absolutely horrendous and I don't know if I am strong enough to go through that. But then on the other hand, I don't feel as though it would be right to bring our baby into the world to suffer in the way he is likely to. What quality of life will he have and are we willing to risk it being poor or him going through major surgery & him not even surviving. Then again could he be ok?

It's so hard, I know what my hubby wants me to do; but he says that it's ultimately my decision because I would be the one going through it.. But where does that leave me

Flumpy, as hard as it is to believe it knowing these thing sprior to birth make a lot of difference
Try to keep your chin up
My dd was not diagnosed in utero, but at 6 wks was referred to ped cardiologist for pulmonary stenosis and probably large VSD along.
Now it also turned out my dd has a condition called Noonan Syndrome (she is the most fab 4 yr odl with no health problems despite a very dim outlook post birth)which caused these issues, and since the minute we were diagnosed the help support and infor we have had has been outstanding.
WE have seen babies who were operated on while still in the womb recover, some babies operated on straight aftr birth or in the few wks after birth for PVS and VSD and the results are amazing.
Maybe ask for a tour of the ped cardiologist post op patients(some allow it)or ask to speak to someone who has gone through what you're going through for support.

My dd did not end up needing any surgery and despite being told at 6 wks that she might go into cardiac decline/failure, she made liars out of all of them - she never even had a VSD at all. but scanning equipment showed one, so they are fallible.

Get more advice, more info to fully make sure you are aware of all aspects of the conditions they have told you about.
The defects can vary greatly in how they affect a child.

Sorry I can't be much help, but just wanted you to know that I know of something you are going through. We have been told our little bean has a valve regurgitation at the 12 weeks scan. Could be nothing - but could mean a lot more. The thing is we have to wait until our 22 week scan to know and the waiting and worrying is killing me. Its so difficult isn't it and my thoughts are really with you. I guess we both just have to wait to see, and hope and pray that things will turn out okay.

Take care

xxx

Flumpy congrats on your pregnancy but sorry to hear your news. Please come over to Heartline - Misdee posted a link earlier. There are a few mums over there who have been in your position. There are also mums whose children have the defect your describe. I think another MNer has a dd with pulmonary atresia.

Is the new test for 22q11 deletion sometimes known as DiGeorge syndrome? Again there are parents there with experience of this.

My dd has significant heart problems and I'd be fibbing if I said it was easy. My dd wasn't diagnosed until after she was born so we didn't have these tough decisions to make.

oh flumpy, i'm so sorry to hear the news wasnt that good.

but its not that bad either, i know to you it is, and i;m not dismissing that, but i tend to look on the bright side.70-80% is good odds in my eyes, and your ds will have the most amazing quality of life, because you are his mum, and will do the best for him no matter what you decide.

heartline again the ladies on there are brilliant

thinking of you.

x

flumpy - sorry the news was not good. We found it so helpful to know what was going on beforehand.

I guess what also made it easier for us was that we had decided before we went to see the fetal cardiologist that dd1 would be born and we would do all in our power to see she got the medical help she needed. We also decided we would just take it one day at a time. We knew that if we had gone for the surgery and she had not survived - at least we felt we had done all that could be asked of us iyswim.

Our dd1 also has down syndrome - her heart defect is very common amongst children with ds who also have a heart defect.

She may need surgery at a later date to repair the leaky valve but again - no point in dwelling on that - deal with it when we need to.

As misdee said 70 - 80% is a good prognosis.

Heartline are fab - lots of support and information.

We found getting as much information as possible also beneficial as there seemed to be so many variables - with her down syndrome and her heart defect. I felt like I had more 'control' the more informed I became.

Flumpy - I'm so sorry for what you are going through, but it is good to know now as there are things you can to to prepare - especially emotionally. Sending you big hugs xx

Flumpy, I'm really sorry to hear about your news. I totally understand where you are coming from with the termination thing - it is something dh and I have discussed often in that we are not sure what we would have done either. Everyone's suggestions here are fab. Heartline is a great organisation, although I have never made it over to their website I have read the stories in their newsletter, and there are some truely inspirational people who have come through a variety of situations and may be able to help you. I wish you and your family much love and strength whatever your decision. xx