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Heart abnormalities (20 week scan)

(32 Posts)
cocop0pz Mon 05-Aug-19 06:02:13

Hi All - we had our 20 week scan done on the 27/7/19. This scan took almost 2 hours to do as our DS was in an awkward position and was being stubborn and not changing the position he was in (obviously he was comfy!). I had to jump on the spot and eventually go for a walk - unfortunately this did not put him in a better position.

The technician was young and didn't seem too confident - she was having real trouble getting images of his heart. She ended up getting a co-worker to come in and take over (while she sat next to her). The senior sonographer was having difficulties also. They went off to 'check with their senior' to see if the heart images captured were significant. That was that and we were finally able to go home.

We took home a disc with 75+ pictures on it! This was a huge amount considering our previous pregnancy we only had about 30-40 pictures of her 20 week scan.

Fast forward to our doctors appointment the following Wednesday, he told us that some heart abnormalities were found. I was shocked! Apparently this baby has a narrow LVOT, dilated RVOT and possible VSD. We've been referred to see a specialist this Wednesday (7/8/19) in hopes of some clarification and possible diagnosis.

His heart beat was normal and I even saw a picture with '4 chamber' written on it... the thought of having a baby with a defect is disheartening and i'm naturally worried. I'm trying to stay positive but I find myself having outbursts of tears with worst case scenarios going through my head.

Has anyone else gone through similar and if so, what was your outcome?

LoudBatPerson Mon 05-Aug-19 07:15:03

This is long, and I am on my phone so apologies for any typos.

We went through similar during the 20 week scan with my youngest DD, now 10. I know just how scary and gut wrenching the feeling is. I would like to share with you our story, to show things can have a happy ending. Also I hope it will show you the level of care we got, and although your journey will be different and unique to you, to give you an idea of what might happen.

During that scan they found heart issues, excess fluid, echogenic bowel, short femur length and a two vessel cord.

Very early on in the scan it became clear they were worried and we were told that they would get a senior person in for help and that person then fetched a third.

We were told the images needed to be looked at and had to wait in the hospital for a little over an hour before the specialist midwife team and consultant came to see us.

We were spoke to about all of the problems and really prepared to be given some bad news about some debilitating chromosome problems, many of which were simply not survivable.

We were referred to a specialist team at Queen Charlottes and seen a couple of days later. We had numerous tests including amniocentesis.

Despite all of the separate issues there was no chromosome problems.

We were referred to the cardiologist team who saw us within a week of the initially 20 week scan appointment. They carried out a really long and detailed scan and we were told that our DD had either a total or partial blockage of the aorta, a medium to large VSD and hyperplasia of the left heart, which at this stage couldn't be determined if was severe enough to be hyperplasia left heart syndrome.

We were floored. From that point on we were scanned every 2-3 weeks at Queen Charlottes and saw the specialist midwifery team at our local hospital weekly.

Throughout the pregnancy they could not be sure of the exact diagnosis regarding the aorta (if the blockage was total or partial) or the extent of the underdevelopment of the left side.

The other problems were monitored, the echogenic bowel resolved, the fluid stayed the same but didn't cause issues, and the cord was monitored for degeneration.

We were given the upmost care. We spent a huge amount of time at hospital appointments, but can not fault any of the care.

Plans were put in place for the birth. My DD would need surgery straight away at birth, at a specialist unit (The Royal Brompton). We were given superb advice to try to decrease the risk of birth interventions as much as possible (so I could leave the hospital with my DD, now have to wait on an antenatal ward). Plans were made so that as soon as my daughter was born they would start a drip to keep the little vessel that by passes the aorta open and a transfer would be made to the Brompton.

In the end the birth didn't go quite to plan. My waters broke at 37 weeks and I was admitted straight into hospital, as per the plan. Contractions didn't start, however after 8 hours there was a very slight dip in DDs heart rate. Very small, would normally only be monitored but due to the situation I was immediately prepped and taken down for a cesarean. This was the correct call as they found the cord tightly around her neck. I am so great full they picked up on the dip in heart rate and acted so quickly.

My DD was born a couple of minutes before midnight weighing a tiny 5lb10, and by 1am was being transferred to the PICU at the Brompton. I was still totally numb and had to be helped to sit up and say goodbye. It was 4 days before they agreed to release me (I had some bowel issues following surgery and there was no antenatal unit at the Brompton to monitor me).

My DD was operated on at 30 hours old. They found the aorta to be partially blocked and this was repaired. Even during surgery the left side development was still seen as borderline, so the surgeon and cardiologist had to decide to either follow the treatment path for hyperplastic left heat syndrome (HPLHS), or for hyperplasia.

If treated for HPLHS it would be the start of a long series of operations and an eventual heart transplant. If treated for hyperplasia with Brandon and it was the wrong call, there was a chance DD would become very ill and need further surgery.

In the end they decided to go with the banding and it was the right decision. I still don't know who they can make these life and death decisions on a heart so small. I am so thankful to the whole team. The VSD was left, with the intention of monitoring and correcting when DD reached around 5 years.

The first 6 months of DDs life were spent in and out of hospital, every cold or slight bug and she would get very unwell. We got to know along the staff on the pedestrian ward very well.

DD didn't grow as well as she should do needed specialist top up feeds with fortified formulas.

At 5 months DD deteriorated, rapidly. Within a couple of days she would barely be awake for more than a 10-20 minutes at a time. Within a few days if this she was back in for surgery with a bypass. The VSD was repaired and banding removed. Straight after the operation she was a new child. So full of entertainment it was untrue.

Her physical development was a little behind due to her health problems, but by the time she was three she had more or less caught up.

She is now 10 and a healthy, energetic child. Loves netball, violin, fencing and choir. Unless you seen her without a top on you would never know all of the problems she has had.

Each year she sees her cardiologist for a check up and heart scan, and at some point in the future is likely to have to have her aorta operated on again, but she is fine. Absolutely and totally fine.

Sorry that was long! I did leave out a lot of stuff. I just wanted to share with you that yes it will be a rollercoaster, but it is possible to have a happy ending.

If you want to ask anything, please go ahead.

stripeyronnie Mon 05-Aug-19 07:26:03

Hi, I've also had a baby with a heart condition- transposition of the great arteries and also a VSD. His wasn't detected at 20 weeks, we were lucky it was picked up before we left hospital. So it is definitely an advantage to know at this stage as you will be managed appropriately in labour. I think the next step for you is likely to be another scan by foetal medicine, performed by a doctor- they should be able to give you a clearer idea of what is going on with the heart and a plan going forward. It seems impossible but try to remain positive- my heart baby is now a healthy 3 year old following open heart surgery as a newborn. The heart condition does not affect him at all. There's a great charity called Tiny Tickers who have a a parents support group, and the British Heart Foundation publish really informative guides to the major heart conditions which I found really helpful. Hope you get some answers soon.

goodforbrian Mon 05-Aug-19 11:55:11

Hi I myself have been through a similar situation with my now 1 year old. During the 20 week scan we were told baby's heart was in the wrong place. Like you we were there for hours and were terribly worried. What followed were a series of tests on both my partner and I to see if baby's problem was associated with a syndrome. Within 10 days all tests came back negative. We were scanned weekly by Fetal Medicine to monitor baby's progress. I had a section at 38 weeks surrounded by specialist NICU (Neonatal Intensive Care Unit) doctors. Baby was taken straight from birth to NICU to be cared for. We spent 3 months in NICU where baby had lifesaving surgery. Now he is home and happy/healthy as anything!
I sincerely hope your baby will be born healthy and this is all a big worry over nothing! But just incase, the only advice I can give you is to familiarise yourself with your local NICU/PICU, you may find yourself spending a lot of time there. Once discharged prepare yourself for many appointments, we were up the hospital weekly for 6 months minimum. It takes a special kind of Mumma to give birth to a poorly baby. But the experience has made me and my partner such stronger people in every way imaginable. Please keep us updated x

cocop0pz Tue 06-Aug-19 04:16:58

Wow thanks for all your replies! It's very much appreciated smile You've all been very informative - this really helps me hold on to hope and positive outcomes. Despite the diagnosis of my DS, I suspect we will be closely monitored from this point on wards throughout this pregnancy.

I'm crossing my fingers that this is just sonographers and doctors being very thorough and perhaps everything is fine.. but at the same time i'm prepared for the possibility that their might be something abnormal.

We go for our appointment tomorrow, i'll keep you updated!

cocop0pz Wed 07-Aug-19 17:39:53

Update: hey all! Just thought I’d share an update as we’ve been to our next appointment, had a further ultrasound and spoken with a cardiologist.

Unfortunately we got the news we didn’t want to hear. Our baby boy dies indeed have heart defects. It looks as though he has a hyperplastic aortic arch and possibly Coarctation of the aorta. Both correctable but explained to us as a “severe cardiological problem” which is not ideal. We won’t be able to find out 100% what the problem is until birth.

We’ve been referred to the hospital specialising in high-risk birth and I know we’ll be in good hands. Obviously my partner and I are devastated and finding it hard to cope with the news we’ve received. I never imagined having a sick/unwell baby and the thought of having to see this tiny little baby with tubes and all that just breaks my heart. The saying “all I want is a healthy baby” really hit home today when we found out he is not the healthiest.

All my thoughts and fears studs, we obviously have unconditional love for this little baby and will do whatever it takes for him to live a successful and normal life. I just wasn’t mentally prepared to be in and out of hospitals in the near future and I know it’s going to be a tough ride.

cocop0pz Wed 07-Aug-19 17:41:22

*does not die! Worst typo ever lol

LoudBatPerson Thu 08-Aug-19 14:33:13

Hello.

I hope you are feeling ok. Its is really good that this has been detected during the pregnancy as it will allow the doctors to start the correct treatments as soon as the baby is born.

As the circumstances are similar, to our DD, I would imagine that similar treatments will be given, and them being to start treatment straight away at birth, really reduces the strain on the babies body, setting them up for the best recovery from the surgery, which I am guessing your baby will need at delivery.

I know its awful to know that the rest of your pregnancy and your babies early life is going to be medically dominated, however, your baby is in a much better position compared to the condition being detected after birth.

I would recommend, nearer delivery, having a tour of the PICU and parental accommodation/set up, so you can prepare yourself. I found this really took away the fear of the unknown.

I hope you are feeling as good as can be. Be kind to yourself, and take all the time you need to recover from the news. It's a terrible shock and you need to allow yourself to process it.

Ivfmommy2b Wed 14-Aug-19 11:00:45

Hello ladies, I have just been reading this thread and am too going through a similar situation. St my 20 week scan a heart issue was detected, had a further scan yesterday & the baby has a right aortic arch, which sounds as tho it isn’t too bad. However they said there are increased risks of chromosome abnormalities, we have decided to have an amniocentesis. Can anyone share any experiences of this? Xx

tisonlymeagain Wed 14-Aug-19 11:05:50

No experience I am afraid, but I was wondering - what did your blood results come back as from nuchal scan @Ivfmommy2b

Ivfmommy2b Wed 14-Aug-19 11:11:46

Hi. They came back as low risk, but obviously this is only for the 3 that were screened & the doctors said the screening isn’t that accurate x

goodforbrian Wed 14-Aug-19 15:44:19

@Ivfmommy2b I mentioned my sons story earlier on in the thread. I had the amnio at around 21 weeks. There was a risk of miscarriage but we had to do it as my boy wouldn't have survived if his problems were associated with a syndrome. Long story short my boys organs were all in the wrong place including his heart. The amnio was very quick and not painful at all, the thought of it was worse than the procedure. My partner was allowed in with me to hold my hand. We had the syndrome results back in 3 days and waited a further 7 days for the full results (genetic testing). Thankfully they were all clear and I have a one year old sleeping on my lap as I type! Good luck x

goodforbrian Wed 14-Aug-19 15:47:43

@cocop0pz I am sorry to hear the results of your recent appointment. You sound extremely strong and logical about your situation! I am sure everything will be ok as they have found this out early and will have the best specialists looking after baby when born. Many baby's are born the wrong side of healthy but go on to live long and happy lives. The best of luck and keep us updated x

Ivfmommy2b Wed 14-Aug-19 16:20:48

@goodforbrian hi, I don’t know why but I can’t find your post,That’s amazing news that you got the all clear. I’m not so much worried about the actual procedure, more of the risk of misscarrige, but more than that is the worry of what might be detected & dealing with waiting for the results. This is an ivf pregnancy 2, so I’ve already had to deal with so much. Xx

goodforbrian Wed 14-Aug-19 20:22:55

@Ivfmommy2b I completely understand how you feel, it was only last year I was going through this myself and I wouldn't wish it upon my worst enemy. The chance of miscarriage is small, 1% I believe. What helped me was to think about the amnio as an answer to your questions. Sometimes the not-knowing is much worse than the actual facts! The specialists will be able to tell so much from your amnio and this information will help your baby when born. I wish you all the luck in the world, either way everything will be ok, even if it wasn't what you once expected x

Ivfmommy2b Wed 14-Aug-19 20:57:18

Thank you. I agree, knowing is so important for me. The anxiety will be the death of me!!! Xx

cocop0pz Thu 12-Sep-19 08:32:55

Thanks for all your messages! Sorry to hear some others are going through this same situation.

I'll 100% be having our DS at the womens high-risk hospital here in Perth, Australia (King Edward) which is a great hospital so i'm not too bummed about that.

We had our latest echo-ultrasound on the 4th September (last week). All went really well, the cardiologist said he could only see one hole now opposed to two. The Aortic Arch was described as still being 'narrow' but also 'borderline'. I found this appointment much better than the first. He measured the Pulmonary valve in comparison to the Aortic Arch and the PV measured 5.5 where as the Aortic arch was measuring 3. I'm not sure if these should be the 'same' or roughly the same, but he did scratch his head and say "there is an obvious discrepancy'. Never the less.. his reassuring words for the day were "it's only week 26 guys, and baby still has a lot of growing to do". Our tech that scanned us the week before (not a cardiologist) also confirmed that "everything seems the same, so nothing more to worry about". We go back for another echo on the 16th October.. which is our 6 year anniversary so I'm hoping we don't receive any further bad news or findings LOL....

We also had an amniocentesis done, a procedure I didn't enjoy BUT was not as bad as it sounds. All came back negative, which is great.

With all that being said, I've gotten over the 'doom-and-gloom' days (moments here and there of course, pregnancy hormones!) and feel more excited now about meeting our little fella smile

We are preparing ourselves for the worst (surgery required after birth) but also hoping for the best.

LoudBatPerson Thu 12-Sep-19 10:54:51

I am glad to hear that the tests so far have come back positively.

Make sure you are kind to yourselves, and take as much as you need to process all information, and treat yourselves. I will keep you in my thoughts.

Onedaymyluckwillchange Thu 12-Sep-19 19:30:33

@cocop0pz just to say I am in a similar situation. 20 week scan found transposition of great arteries confirmed by cardiologist this week.

So pleased you are now starting to see the wood for the trees.

I hope to get there at some point.

cocop0pz Fri 13-Sep-19 01:27:38

@LoudBatPerson thanks! Your thoughts are very much appreciated smile

@Onedaymyluckwillchange sorry to hear you are also in a similar situation. When is your baby due? If it makes you feel any better, heart defects are the most common birth defect so we are defiantly not alone. I have joined a group on Facebook too (for my sons suspected condition in particular) and have found the people on there to be incredibly helpful. I suspect there would be a group for Transposition of the great arteries hearts too! Speaking of TGA, one of my friends daughters was born with this (along with 2 other defects: pulmonary atresia and a large VSD). She had two surgeries as a newborn and was out within a week after (she bounced back well!). Shes had a further 2(?) surgeries since and is a lovely, very lively 5 year old now. She was doing ballet classes yesterday and it was too damn cute smile You would never know she was a heart baby. She's just been given the all-clear of going to the hospital for a whole year smile I hope this helps put your mind at ease!

Also keep in mind that what they are measuring right now is tiny. They will be able to give you a proper diagnosis as soon as bubs is born. This is my last pregnancy so i'm trying not to let the heart defects ruin it for me lol! Best of luck to you and your bubba.

Onedaymyluckwillchange Fri 13-Sep-19 17:14:21

Thank you @cocop0pz I really appreciate your comments. Due in January and it just seems so far away. I have heard of so many positive stories because this is a fix operation meaning, all going well, there will be no other intervention ever needed. But, it's a huge operation and life threatening at birth hence needing immediate surgery. That's what scares me so much because we just don't know how the surgery will go / if there will be complications. So pleased to hear your friends daughter is doing well smile

How are you finding it when people congratulate you on your pregnancy? I would so love to be positive but I feel very very detached and not at all excited.

Also, the fetal midwife I am in contact with, whilst very nice, whenever I speak to her she just sounds too sympathetic. I know this is extremely serious and I am emotional enough as it is but I don't think it helps when they are so softly spoken and so pitiful. I hate being pitied and really struggle. I need someone upbeat or just straight to the point telling me the facts, I don't want someone just agreeing with everything I say so that I feel better.

I have a 4 year old DS and he is my main priority. It's how all this will affect him, is what I'm struggling with also.

cocop0pz Mon 16-Sep-19 02:06:58

@Onedaymyluckwillchange no problems smile try be kind to yourself, the news is still relatively new to you and it's normal to be afraid of the unknown. Any heart surgery is life threatening however given today's technology and expertise - the survival rate is very, very high. Even for the most complex CHD's. Keep your head up and your thoughts positive smile I still have my moments of fear, but knowing it's been found now is actually what's best for baby and you will have the best team awaiting bubbas arrival, ready to do whatever they can to ensure you are both ok!

Essentially when I fist found out about my little guys CHD, I felt a bit disheartened when people congratulated me. I remember the week after I found out, a co-worker asked if I knew the gender. "Boy" i told him "but I don't care either way smile" and his reponse was the typical "of course! All we all want is a healthy baby smile" and I was like.. "yes...." lol. Having said that though, a CHD does not mean the baby is 'unhealthy'. Everything else is perfectly normal, the way I see it is that his little ticker just needs some TLC when he is born smile

I have managed to find the excitement again, but it did take a couple of weeks. Just remember - CHD or not - you are still having a little baby! and that's something to be happy and excited about. Another thing that helped me try 'enjoy' this pregnancy (as much as one can enjoy pregnancy lol!) is reminding myself that it is my last. We only wanted two children smile also what has helped is that I managed to fall pregnant so quickly (this was actually an unplanned pregnancy) and a reminder that some women just can't fall pregnant this easily and that I should appreciate that.

I get you with the sympathy and pity! arghh.. that annoys me.. I had that straight after we found out, which lead to a break down! But since then, the midwives have kinda lightened up. The one I saw last time was different to my usual one, and she was a little sympathetic but I just turn to humour to ensure them that I AM fine and I don't need their sympathy.

If you have family to support and help with your 4y/o when new bubs comes, I would heavily rely on that. I have a 1.5 year old and I am in the same boat there. I'll have my family bring her into the hospital to visit as much as possible smile but we also have to ensure the new bubs is doing OK too.. don't put too much pressure on yourself and during that time just remind yourself that it's just temporary. You'll all be home before you know it. My friend (with the CHD little girl) also informed me that the children's hospital here has family rooms. So both parents can stay over night, and they also allow young children. She stayed with her husband and their 6 y/o son last time their daughter had an op. Perhaps sus out if that's an option in your area smile

Sending you good vibes, like I said above - try stay positive and enjoy your little bubba smile

cocop0pz Fri 11-Oct-19 02:28:38

Just thought I'd post an update encase there is anyone who finds themselves in our situation in the future smile

So week 20 (anatomy scan) 24 Jul 2019:
Our sonographer picked up some heart abnormalities. She reported this as left and right ventricle disproportion as well as a possible ASD. The left ventricle (LVOT) appeared narrow. Our doctor referred us to the high-risk womans hospital (King Edward, Perth Australia) for follow up scans with a cardiologist.

Week 22 (7th August 2019):
We had an ultrasound with the cardiologist at King Edward - the scan itself was pretty quiet whilst he did his best to scan the heart while our boy kicked and moved around (lol). I could tell he was a little frustrated but after the scan was completed (about 30 mins, my memory is foggy on this one). He sat us both down and got out a print-out of the heart. He told us that both a small VSD and ASD were spotted in the ultrasound - he told us an ASD is very common in babies and he see's about 6 babies a week with this. Never the less, the two holes were both small and he predicted they would close on their own before, or after birth. Phew. Then comes all the nitty-gritty stuff. He circled the mitral valve in the diagram (the little valve that lets blood flow from one chamber of the heart, the left atrium, to another called the left ventricle) - this looks smaller than it should be.. but again, to be looked at later on and determine if it's going to cause any major problems. The big issue was the fact that his aortic arch appeared to have some major issues. We were told that our baby quite possible has Coarctation of the Aorta and/or a hypoplastic aortic arch. If this was the case, he would need surgery (if not surgeries) in order to fix this life-threatening condition - devastating! Another scary addition was that this can sometimes be linked to genetic conditions (trisomy 13, 18 and some more uncommon genetic conditions). An amniocentesis test was recommended and we had this one on the 14th August - it was not as bad as it sounded but I was glad to get it over and done with.

Week 26 (4th September 2019):
We had a follow-up with our cardiologist to check in and take another look at bubs heart. We were a bit more relaxed during this scan and we'd looked into the condition the last few weeks to try educate ourselves on the heart defect (Coarctation in particular). The cardiologist was also a bit more upbeat this appointment, which made the whole appointment have a but more of a happier vibe. He did his thing and checked out the heart - bubs was much more cooperative this time. One of the holes had disappeared (he didn't mention if it was the VSD or ASD) and the right and left ventricles were measuring pretty well. He said it was a small discrepancy. The aorta seemed OK at the side view, but when it came to the 3-vessel view there was a size difference between the aorta and the pulmonary arch. The PA is measuring 5.5 and the aortic arch measuring 3. I'm not a medical expert, but from what I suspect - these should be closer in range. The words "mild" were thrown around, he still suspected Coarctation and/or hypoplastic aortic arch. He did remind us though that there were still many weeks to go and baby (along with his heart) still has a lot of growing to do.

I'm now 31 weeks, yesterday (10 October 2019) we had our growth scan done with the same professor who did our amnio. Bubs is measuring almost two weeks ahead (yikes!) and almost 2kg already - although they did say my daughter was going to be huge at 37 weeks but she turned out only 3.5kg so I don't trust this estimate too much. Whilest he is no cardiologist, he checked out the heart as per the growth scan and could still see a size difference on the 3-vessel view between the AA and PA. He didn't go into too much detail here as we are due for another fetal echo soon. He did say that the right and left ventricles were almost the same size now and that the discrepancy is very, very minor at this point - which was very comforting to hear.

We see our cardiologist on the 16th October so it is going to be very interesting to see what the outcome is. I'll update here with the findings smile I suspect we will be coming up with a 'game plan' to possible outcomes after birth which will be nice to have in place. Although we obviously don't want our baby boy to have surgery, I'm accepting the fact that it will only help him in the long run and it's what's best for him if it is needed.

**I should also mention our amnio results came back all negative, and that our c-section has now been booked for the 4th December 2019 smile

goodforbrian Sat 12-Oct-19 09:03:47

@cocop0pz what a fabulous update! You sound so strong and positive for your little boys future. He is a little fighter for sure! I am so happy things are improving and how exciting you have your c-section date booked! I will be thinking of you and sending my best wishes your way. Please keep us updated, you are doing great and I am sure everything will work out fine smile

Onedaymyluckwillchange Sun 13-Oct-19 21:10:10

@cocop0pz thanks for the update, please keep us posted. You sound like you have a very positive out look which is brilliant.

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