Asking for a handhold please, fetal abnormalities very scared

[Tigger85]

Hi

I am 21 weeks pregnant with a little boy, a much wanted and loved little boy that took 3 fresh rounds and two frozen rounds of IVF to conceive. I have a 2 year old Ds also from IVF who had congenital brain abnormalities that were discovered at the 20 week scan, we were pressured to terminate him throughout the pregnancy and were mostly given doom and gloom but he has ended up being a happy healthy boy with normal development. I also had a miscarriage following a successful frozen round of IVF last year. I had PND after my son was born and although the depression side of that has now gone I still struggle with the anxiety side of it but it's usually fairly well controlled. I came off my medication in November ready for IVF as I didn't want anything to affect the IVF or development of the baby if it was successful. The little boy I am carrying now was conceived on our last attempt at IVF as we have run out of funds a d racked up debts.

There have been problems from the beginning of this pregnancy with two heavy bleeds that both went on for 6 hours with bright red blood at weeks 5 and 6. I thought I was miscarrying but baby was there with a string heart beat on the early scans. I was alot more sick this time round and couldn't keep anything down apart from eating tiny amounts of cereals at regular intervals and small frequent sips of water. I couldn't keep the prenatal tablets down and my anxiety went haywire thinking this would cause defects on baby's development, I lost 7lbs due to not being able to eat, the sickness didn't go until almost 15 weeks. I was convinced I would see my baby dead at the 12 week scan but there he was alive and very wiggly on the screen. I felt movements from 14 weeks but they stopped completely from weeks 17-19 and I expected my baby was dead again but thankfully I felt him again towards the end of week 19. I started to struggle with anxiety and panic attacks leading up to the 20 week scan due to my experience last time with my son's brain abnormalities, not helped by the fact I had to go to a hospital an hour away for the scan and my partner could not come due to covid. The sonographer did check the brain first for me and it was normal so I allowed myself to relax. I had to go for a walk to try to move baby as they were lying on their front so she couldn't get a good look at his organs, at the end of the scan she said she's sorry she can't see the stomach and can't check the heart anatomy due to babies position and there is a problem with one of babies kidneys, either cysts or a block. She did a refferal to fetal medicine and I was sent home with no further explanation. When this happened with my son's abnormality I was taken to a private room until we were able to speak to a doctor who explained what was found and what tests would happen. This time told basically nothing and sent home. My partner rang up the doctor from fetal medicine that we had last time to see if he would have us again, we are in Wales and this doctor is in England so a different trust, he agreed and told us who to ring in Wales to request a refferal. They agreed to do this but I would need another scan in Wales first so they could give the doctor in England some more information to go off.

I had the second scan yesterday at 21 weeks, again alone as partners not allowed and at another hospital around 40 mins away. The good news was that one kidney is fine and she thinks the problem with the other kidney is caused by a block causing backflow of urine into the affected kidney, this can be corrected after birth and is potentially less of an issue than the other potential diagnosis. The bad news is that she can't see the stomach again so baby might not have one, but the amniotic fluid levels are normal and she can see baby swallowing suggesting that there is something there somewhere. She said if there is no stomach usually there is too much fluid as everything just passed straight through the baby and sometimes there is low/no fluid as the baby cant make any fluid. She said it's unusual to not see the stomach on two ultrasounds in a row but maybe baby has just happened to empty their stomach on both scans. Evenore worrying she said baby possibly has something called transposition of the great arteries, this is when the aorta and pulmonary arteries are on the wrong side and baby needs surgery soon after birth or they will die. I ended up having a panic attack but they were kind and let me stay until I got it back under control, I had another panic attack in the car and had to stay in the car park for another hour until I was in a fit enough state to slowly make my way home. They did send the refferals off straight away and my partner called the hospital in England and managed to arrange appointments with the same doctor from before who we trust for Friday, we also have an appointment with cardiology on the same day. I spoke to my gp about going back onto my medication because I am struggling to keep the panic under control and keep having panic attacks, but the medication can case heart defects in pregnancy so it's not safe, although that is more for first trimester, third trimester it can cause withdrawal and I don't want to hurt my baby any further so I don't know what to do. Worried the suicidal and invasive thoughts are going to comeback and I will be mentally broken by the time I have this baby, that's if the baby is even going to be viable. I haven't been able to sleep at all, I feel utterly drained and exhausted and I'm struggling to keep it together for my little boy. He is a sweet and sensitive boy and i know he is picking up on it but I can't help it. I'm really scared about friday, I have s terrible feeling that they are going to give us really bad news and I will have to pick between a termination and letting things happen naturally and maybe having a few minutes or hours with our son before he dies. I'm sorry for the long lost I'm just scared and have no one to talk to other than my partner.

Sorry to hear all this. Just wanted to say someone is here and thinking of you.

Offering my hand to hold OP. I have been there with abnormalities discovered at the 20 week scan and referral to fetal medicine. My little boy is 7 now, born with brain abnormalities and cleft lip/palate.

I am so, so sorry OP. That is a terrible ordeal.

I will be keeping everything crossed for good news for you

Wow. That's a lot of worry.
You are welcome to my hand to hold.
Love to you and baby

I'm so sorry OP. I wish I could say something to make you feel better but I didn't want to read and not reply. I'm pregnant now too and struggle with anxiety and assuming the worst in every situation so I sympathise hugely, you're going through something incredibly hard and please don't feel you have no one to talk to, you can always come on here.

Were you ever given any talking therapy for the PPD/anxiety? I have found CBT quite helpful at managing the worst of my anxious thoughts, I was given phone sessions on the NHS.

Sending you all my best wishes, thinking of you

what a tough thing to go through. I can absolutely see why you are worried but so far they have detected 2 treatable conditions.

At 6 weeks old ds2 was under several consultants for a whole raft of anomalies that were discovered post birth. There were a lot of worst case scenarios floating around but as you know from your son, these do not always come to pass. By 2 his was given a clean bill of health, despite his wonky kidney (damaged by a blockage in utero) and even wonkier skull.

I wasn't given any talking therapy just medication which did work quite quickly, the health visitor also suggested mindfulness and meditation which also helped a little. I will be asking the gp for any non medication based help they can give me because I don't know how I am going to get through this and be a good stable mum for hopefully both of my boys if I can't get it under some degree of control.

They were wrong about the likely outcome for my ds, they expected atleast some degree of developmental delay or disability but he was discharged from neurology due to being advanced for his age. He will be the youngest in his school year and so far seems to be hitting milestones around the same time as his friends who are several months older, except for potty training which he has absolutely no interest in. I am hoping this will be the same but I can't see how it will be possible. My ds has two abnormalities in one organ, this little one potentially has three organs with abnormalities, neuro is very grey, you can't really know the outcome until sometime after the child is born. I don't know if problems in other organs are more black and white. The midwife said the heart and stomach may not be abnormalities and due to fetal positioning as baby was not in a great position for either scan. But I feel she was just saying that to stop me from having a complete meltdown, surely with the heart the arteries are either in the wrong place or they are not.

The only one of the potential issues I can help you with is the kidney one. My first had a blocked urethra, which resulted in both kidneys failing and lungs collapsing due to lack of amniotic fluid. I ended up terminating. However, it sounds like your ds has a blocked ureter, which is not a major problem. My cousin's ds had this and had surgery after birth. He is now a strapping 17 year old who plays soccer at a high level. So basically, I wouldn't worry about a blocked ureter.

The other issues, you can really only wait and see and hope for the best. The fact the sonographer felt the levels of amniotic fluid indicated a stomach is good. Having amniotic fluid also means one of the kidneys is doing its job (I was very surprised to discover that amniotic fluid comes from urine).

I'd say try and get back to the meditation and mindfulness and ask for some counselling to help you through this.

Hang in there. One day at a time. I have learned that there is no point in worrying about the unknown. So much easier to say than do I know. We had abnormalities at 20 week scan and I can't imagine having to hear them without your partner there. You will make this ok OP I know it. It's a small thing but I did pregnancy yoga. It really helped. I also know my anxiety was felt by my then two year old boy but that was a matter of days rather than the duration. It made me a stronger and better person. But I wouldn't wish it on anyone.

Can you get a referral to the perinatal mental health team in your area OP? There are medications you could consider and you need expert advice.

If it helps my brother in law is 28. They thought his kidneys weren't right. He's as right as rain.

Just a hug and a handhold from me lass.

I'm so sorry OP. I hope Friday brings more answers and positive news.

Our DD also showed up with some different congenital abnormalities (albeit at 12 week scan) and like your DS1 has surprised everyone by doing so well and being completely healthy and happy! I'm 16 weeks and keep expecting a problem to come at the 20 week scan so feel gutted for you that you are going through these worries again as it probably feels like your worst fears have come to pass again

I hope that Friday tells you more - are they able to do a fetal echocardiogram? That should find most major things. It sounds like there were some hopeful indications for your baby's stomach too

I really really feel for you though and will be thinking of you. The worry in pregnancy is horrendous, the worry after problems in a first pregnancy even more so and to be going through it again must be beyond tough

Everything crossed for you

Oh lovely, another one saying to get yourself referred to maternity mental health services. I was consultant led for mental health during both pregnancies and my consultant told me that past the first trimester it’s absolutely fine to be on certain antidepressants (up to certain dosage levels). Both children born absolutely fine and gorgeous and no adverse affects from the antidepressants (nor withdrawal effects despite me being on a much bigger dose with baby two).
Much love.

*no adverse ‘Effects’ not ‘Affects’ 😂

With you in spirit OP, that sounds truly dreadful. I say this as someone awaiting TFMR so I'm very sad too, but I've not had your fertility journey to compound it. I cannot imagine how that makes you feel in this situation. The only thing I can offer is reassurance on the kidney issue. If it is a urinary tract abnormality it's probably easily fixed. I had one in childhood that got sorted and now I'm completely fine. Before the days of keyhole for me, sadly, but now it's a doddle and they can even do it in utero I think. I can't comment on the other things, but doctors and fetal medicine are amazing 💕

Am so sorry your going through all this. I’m glad you’ve got a doctor who you know and can speak to fairly quickly. Will be thinking of you x

I think they are doing. Fetal echocardiogram, my first appointment is a cardiology one, then an hour later a fetal medicine one with the doctor we had last time. I'm assuming the cardiologist will give him their findings, then he will scan the other body parts then talk to us about what is happening, further testing, viability, and options. I just hope they don't want us to make a decision about termination there and then, I really really do not want one but I don't think I could bring a baby into the world that will only know suffering either. The birth last time was also very traumatic and I have prolapses that require surgical repair due to the use of ventous and forceps so I don't think I'd want to risk birth for a baby who won't live incase it makes my conditions even worse. At this point last time having googled my ds1s conditions and reading lots of scary stuff and also being told repeatedly to seriously consider my options by various hcps I thought the only choice was going to be termination and i had already secretly decided that if that was the case I would have the first part done at the hospital then hang myself during the night once home so I could die with my baby. I have had thoughts like that again but I would never carry them out as I wouldn't abandon ds1. I am wondering if this is a sign that I shouldn't be trying to have children, each time I manage to get pregnant something horrible happens. Not that we can afford anymore IVF anyway. My sons conditions are both a 1 in 100 000 chance of occuring, the second pregnancy was a first trimester miscarriage, I think odds of tga are 1 in 4000, I have no idea what the stomach thing is and the odds of hydroneohrosis is much more common 1 in 100, multicystic kidney displaysia which is the other potential diagnosis is also 1 in 4000. I have no idea what the chances of having all these things in one baby are. I'm not religious but I have been hoping and sort of praying to chance that they were wrong about the stomach and heart, I just can't see how they could be wrong. We had IVF because my partner had a vasectomy in his previous relationship and the reversal surgery did not work. He is a healthy person and so am I, the only thing that potentially affects my fertility is that I lost one ovary after having an operation to remove a large ovarian cyst.

Tackle each hurdle as they come. Talk a lot with your partner and try to get as much love and cuddles from your DS to keep you grounded. This must be an aweful time for you. Keep some time in the day to worry, to cry, to scream. Because all these emotions need to flow. And then remember that you don't know anything for certain yet. And let it fade to the background just a little bit. Long enough to play with your son, listen to a bird singing and eating a bit of chocolate.

Try to hang in there.

ALSO :STOP GOOGLING. This doesn't help at all. It just makes things worse.

I’m so sorry you’re going through this. I hope Friday brings clarity for you. Lots of helpful replies, just wanted to add a couple of things I thought may help

• as you have realised, you need help for your mental health, this is an incredibly hard thing to go through even without previous difficulty with anxiety/mood, and from your posts it seems like going back on medication may be a good idea. The commonly used medications in pregnancy do not carry an increased risk of heart defects, and the risks around withdrawal are very minor. Many many women are on antidepressant medication for the whole of pregnancy with no problem - and your own mental health is hugely important to get you through this. As you’ve said - even if you were worried about the meds causing a heart problem, you weren’t on them in first trimester and that period has now passed. Please don’t feel any concerns about using the meds if you need them - your GP may be able to help you with this straight away but I think you’ll find ongoing input from a perinatal mental health team really helpful.
• re TGA - this is NOT a death sentence. It depends on the whole picture but if just looking at TGA alone, it’s almost always operable with really good outcomes
• there’s no way they are going to expect a decision about a termination of pregnancy, on Friday. Friday’s appointments are for gathering information with scans, discussion in detail of what they think might be going on, they may offer you an amniocentesis, and they may discuss possible options going forward but you certainly have time to decide.

Try to take things one day at a time, I know it’s easier said than done.

I hope you get better news on your next scan. I'm also pregnant at the moment and had the horrible experience of being alone in the hospital and them finding a heart defect at the 20 week scan. And then the wait and worry while they worked out if it was a chromosomal problem. Thankfully it isn't, and although it will require a scary operation we are hopeful again.

Definitely see what help you can get for your mental health and try not to worry too much about your big one. My toddler has definitely seen us both cry and have a really hard time, of which she has no real understanding.

Big hugs to you. It is really difficult.

@Amymone

With you in spirit OP, that sounds truly dreadful. I say this as someone awaiting TFMR so I'm very sad too, but I've not had your fertility journey to compound it. I cannot imagine how that makes you feel in this situation. The only thing I can offer is reassurance on the kidney issue. If it is a urinary tract abnormality it's probably easily fixed. I had one in childhood that got sorted and now I'm completely fine. Before the days of keyhole for me, sadly, but now it's a doddle and they can even do it in utero I think. I can't comment on the other things, but doctors and fetal medicine are amazing 💕

I'm so sorry that you are waiting for tfmr, I hope you have lots of support and people looking out for you ❤️ x

Ask your hospital or midwife if you can be referred to a MH midwife. I had one as my other son was diagnosed with a genetic condition while i was pregnant.

I have heard of other babies having surgery to correct this heart condition. It's big surgery but you dont know if it will be needed, you dont know for sure he has this condition. One day at a time. Same with the stomach- it might be fine, you dont know yet. You can be born with one kidney very healthy.

CBT might help but I totally understand your worries. Try to stay off Google even until after the scan.

@Tigger85 thank you xx

Update

Fetal medicine app today has left us feeling overwhelmed and not sure if things are better or worse than we thought. Baby is viable hopefully but will require major heart and abdominal surgery. He had a rare condition called heterotaxy syndrome with left isometerism. This means that something went wrong in development with coding left and right for his organs. Instead of having a right and left upper heart chambers he has two left ones, so the part that starts of the electrical signal to beat does not exist for him, every heart cell is capable of starting a contraction and some over cell has taken over that function, this means he could start to have a too slow heart beat or his heart might not beat in the correct rhythm. I will have to go for weekly checks to see if there are changes, if it happens in utero nothing can be done, after birth he may eventually need a pacemaker and will be a lifelong cardiac patient. He had a hole between his lower heart chambers which is a moderate size do will need heart surgery at approx 4 months to close it. His pulmonary artery is also slightly smaller than it should be so needs monitoring to see if it becomes any narrower, currently it is functioning well but if it narrows he will need surgery to widen it. Secondly they can't see the stomach because there is likely a block somewhere, this is due to the left and right coding issue. They won't be able to see where and what type of block it is until after he is born where they will put s catheter through his nose then down his throat to find the block. It could be a simple block, a fistula between his air tube and food tube or a blind ending block in his food tube with a gap to the stomach. He will need abdominal surgery to fix it relatively soon after birth but can be fed intravenously to begin with so this will probably be the first surgery unless his heart gets worse. His kidney problem is again caused by the left right coding issue, he has three ureters instead of two, the kidney that has an additional ureter may have a kink where they cross each other causing urine to not drain properly, there is also a little balloon of tissue entering the bladder from the ureters. This is s relatively simple fix and shouldn't be problematic once it's sorted so for now I'm not going to even think about it. They have to keep an eye on amniotic fluid levels weekly due to the stomach block. Finally there may or may not be a problem with his spleen, it is commonly absent with heterotaxy syndrome or sometimes there are multiple small ones instead of one normal one, if he doesn't have one he will be prone to infections so will have to take antibiotics for life. But it's unknown wether this is going to happen or not. It's really hard to see on ultrasound so we won't know until birth. It's alot to take in, but everything is operable, he will be going to nicu for potentially a long time but it's not a death sentence. Individually all the surgeries gave good chances of success with good outcomes it's just there's so many that have to be done so young. There is a chance he will die in utero or during surgeries as there is with all surgeries. We will also be referred to genetics in cardiff, sometimes this is due to chromosomal abnormalities and sometimes it just randomly happens. Termination is an option but I don't think we will be taking that choice unless things get worse. His life expectancy will be abit below average but not decades less, the only thing they said he won't be able to do contact sports and high level sports. Most people don't do high level sports and there's plenty of non contact sports he can do so to me that's pretty much a non issue.