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Asking for a handhold please, fetal abnormalities very scared

77 replies

Tigger85 · 09/06/2020 10:35

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.

OP posts:
Crunchymum · 15/07/2020 12:40

Sorry to hear your sad news @Tigger85

There are no words but please take comfort in the fact you were an amazing mummy to your little baby, for the short time you were growing him.

Please take all the support offered to you and be kind to yourself Flowers

Peterbishopssarcasticsmile · 15/07/2020 12:42

I'm so sorry you're going through this, I've been there too - abnormalities at the twenty week scan, ours were incompatible with life. It's awful, absolutely hideous and I am so so sorry you've had to go to scans on your own, I felt sick for you just reading it.
Whatever happens and whatever you decide to do Op, it will be the right thing for you.
I think you're being incredibly brave and handling this well - I hope they can give you more information at your next scan and it's better news.
Waiting in the hellish limbo is awful

Peterbishopssarcasticsmile · 15/07/2020 12:42

Oh my god I'm sorry op the rest of the thread didn't load so I didn't see your updates I didn't mean to be insensitive.

I'm so so sorry for your loss x

piscean10 · 15/07/2020 12:47

My heart really goes out to you Sad. I was in the exact same position a year ago. My ds was 3yo and knew everything. We eventually had to terminate at 23 weeks. Truly heartbreaking. I hope that you have a better outcome. you are welcome to pm me if you need any more information.

Ristar · 15/07/2020 12:49

So sorry op. The only advice I can offer is that there are some medications that are ok in later pregnancy so maybe talk to your GP. I took sertraline during my first and Venlafaxine with my second. No problems with withdrawal for either baby.

piscean10 · 15/07/2020 12:50

I'm truly sorry op. the post didnt upload when I posted. I'm so sorry for your loss. I have been there. Sending you lots of love and hugs. Take it each day at a time.

SpillTheTeaa · 15/07/2020 13:00

I'm so sorry OP.
Will light a candle for your special boy tonight. Sleep tight beautiful boy

Flyingarcher · 15/07/2020 13:33

So sorry for your loss. Ethan is at peace and with no pain. Many good wishes.ThanksThanksThanksThanks

Tigger85 · 15/07/2020 14:36

Thank you to all those who have posted their condolences for losing little Ethan. He didn't just pass away in the end we did go for tfmr. Everytime we went back they found more and more wrong. His final diagnosis was VACTER association and heterotaxy with left atrial isomerism. He had multiple defects in his lumbar and sacral spine, three major heart defects, a duplex right kidney with hydroneohrosis, uterocele in his bladder, oesophageal atresia, imperforate anus and his intestines connected to his bladder, Mal rotation of his gut. They said everything was potentially oporabke but he would need immediate surgery to survive, he wouldn't leave the hospital until he was atleast 6 months old but from looking on VACTERL support groups a year or more constantly in hospital is quite normal, he would need dozens of major abdominal surgeries, spinal surgery and heart surgery, his body might not be able to pull through so many surgeries. If he survives to 2-3 they would know if he would be able to achieve a good quality of life but he would always have a low life expectancy and would also have problems eating, drinking and going to the toilet. The only thing that was guaranteed was that he absolutely would suffer and be in alot of pain throughout his entire infancy and way childhood if he was able to survive at all. So we made the heart breaking decision to let him go, I nearly backed out if the tfmr I was so scared and they left us waiting over an hour before bringing us in. Every fibre of my body screamed at me to run out if there and save him but I didnt, I forced myself to just lay there absolutely still. He kept kicking right until his last moments. I felt like I betrayed him and didn't fight enough for him, like a murderer and immediately regretted it. He was born 12 hours after the start of induction, I have severe bladder and bowel prolapses from the forceps delivery of my older son, I found it very difficult because I can't use my muscles properly and found it hard to know if I needed to push. The midwives were very kind and patient even though I broke down when it got really bad and kept crying for him, saying I wanted him back and calling myself a murderer abd that I wanted to go with him. It felt like my bladder was going to explode and I couldn't empty it, he was preventing me from being able to but it was stopping him from coming out. In the end they gave me pethidine and then were able to put a catheter in, as soon as my bladder was emptied I was able to deliver him. He weighed 880g and was so beautiful, he looks so very much like his brother. There were some other visible abnormalities that were distressing to see and had not been picked up on ultrasound scans, we had no idea that those abnormalities were possible with his diagnosis and were very unprepared to see them. It did help us see that we absolutely made the right choice for him as awful and painful as it was. We got lots of photos and hand and footprints. I had bought him several little outfits in different sizes from a specialist in baby berevment clothes and premie clothes so we were able to give him his dignity. We also had a special blanket with his name on it and a cuddly fox with his name on it. We spent a long time kissing him, holding him, cuddling him and telling him we love him and how sorry we are that this happened to him. They provided a cold cot for us to try to preserve him but the more you take them out to cuddle the quicker they deteriorate. We had a sleep for a few hours then some last cuddles and goodbyes as he had changed alot. Leaving the hospital without him was awful and so hard. I have been cuddling with his fox and blanket to try to get myself to sleep. Many members of my family have been absolutely awful to us since Ethan died and I just can't understand them. The one time in my life I actually need them to support me and they have all abandoned me and been really quite crul, his funeral is next week, I never thought the first funeral I would ever plan would be for my precious baby.

OP posts:
DibDibDibduh · 15/07/2020 14:58

My heart is breaking for you and your family ,. RIP little Ethan xxx

Iamnotminterested · 15/07/2020 15:13

I have no words.

RIP Ethan Flowers

MatildaTheCat · 15/07/2020 15:16

My thoughts are with you. Please know you did the most compassionate thing possible for your beautiful Ethan. Flowers

ElsieMc · 15/07/2020 15:20

What can I say. So much sorrow for you to bear op. Your son is at peace.

MrsCrosbyNRTB · 15/07/2020 15:24

I am so so so sorry. RIP Baby Ethan. Sending you love and light x

geojojo · 15/07/2020 15:30

Oh I'm so sorry to hear of your loss. Your Ethan sounds beautiful. Sending you and your family lots of love

SkylinesTurnstiles · 15/07/2020 15:36

I’m so very sorry this has happened to your family.
Sending love and strength
RIP little Ethan

SeasonallySnowyPeasant · 15/07/2020 15:37

I’m really sorry to read this OP. You’ve been very brave and made your choices based on Ethan’s best interests.

CooperLooper · 15/07/2020 15:41

I am so so so sorry for your loss x

FrauleinF · 15/07/2020 15:49

I am so sorry for your loss, and shame on your family for their lack of support.

Letting Ethan go and ending his suffering was an act of pure love for him, never forget that 💜

monotata · 15/07/2020 16:02

@Tigger85

I’m so sorry to read this. I read your original post at the time and hoped for a happier outcome for you.

I wish you peace and calmness going forward. Please do not engage with family who are not being kind to you xx

AKissAndASmile · 15/07/2020 16:10

I'm so sorry, OP. That is devastating to read and so so unfair. I'm also sorry your family are behaving like this when you need them the most.

RIP, darling Ethan xxx

Ristar · 15/07/2020 16:15

I'm so sorry, either the thread didn't update or my previous post was late. I'm now seeing your updates.

I am so so sorry for your loss.

Georgieporgie29 · 15/07/2020 16:45

Flowers I am so so sorry for your loss and for your thoughtless relatives.

Q1w2e3 · 15/07/2020 17:04

I am so so sorry for your loss. You are very brave. I hope you will have the support of your family soon. Sending you love and strength. Xx

Drogonssmile · 15/07/2020 17:17

Oh OP I'm so very sorry for your loss of Ethan, for you, your DH and your son. To deal with badly behaving family on top is just so unfair. My thoughts are with you xxThanks

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