I'm 42, 43 next month and at my 20 week scan in January, it was found that the baby had a fatal skeletal dysplasia. After many tears, much heartbrake, many consultations, more scans etc, and four weeks later, it was decided to terminate the pregnancy as I was told that the baby would not survive. Following tissue biopsies, DNA tests I was informed that no chromasonal abnormalities were detected, and that there was no reason at all that any future pregnancy would result in the same.

What surprised me more than anything was the amount of people I know who have experienced the same traumatic event, and what surprises me even more, is the lack of support made available to people like me (and their partners) by professional bodies. Has anybody else out there had a similar experience, and felt that they could have received more support at the time, e.g. put in touch with women who have been through the same thing?

Don't get me wrong, I have nothing but praise for the staff on the labour ward who delivered the baby, they were excellent. However, a colleague of mine who went through a similar experience at 20 weeks did not get the same care from staff on the gynae ward.

 

 

Hi Macca50

I've been searching the net for similar.

I had my 20 week scan two weeks ago, was told that our baby had a skeltal dysplasia. We decided to terminate, I, almost immediately, I couldn't possibly put my baby through the full pregnancy and then the birth then watch him die which is what was basically going to happen.

We had a week of another scan, then the injection to stop babys heart then the tablets, then two days later I was induced, although I actually started labour on my own, I willed my body to do it. 10 hours later I had a beautiful baby boy, who was just perfect in every way, he didn't look "abnormal", he looked just like his big brother but was tiny, and I mean tiny. The hospital, doctors and midwives especially the one who was with me when I gave birth were amazing, and the after care was brilliant, then the bereavement midwife came out to see me which was invaluable, we went through the labour notes and it made me feel really positive. Then she made me an appointment for a councellor, if I want one in a few weeks, and to see the gyno doctor who will be able to help me through fertility options as it took us a long time to conceive both occasions, and he will be able to go through the PM also.

The consultant in the other hospital where we had the procedure was brilliant also, I have a followup appointment with her, she has already called me to confirm that the amneocentesis confirmed that there were no chromosone issues and in her opinion, this is unlikely to happen again. I literally fell to my knees when she told me, as I'd been silly and googled the disorder, not knowing that there were over 300 different types, and not knowing what type baby Rowan had. She reassured me and since then I have been very positive although some days are unbearable.

I feel the need to talk about what we went through a lot, I didn't deliver the placenta properly as it got stuck, so had to have an epidural then two blood transfusions as I lost 4 pints of blood through out labour so after what was an ok birth the ending was theatre, not good.

I feel like the three months we've been told to wait for the PM results is far too long and I feel like I need to get pregnant straight away, I was told to take my folic acid, in case I do fall quickly.

I need to hear positive stories about women who have had exactly the same experience as we have, so I can keep up my positivity.

I note that you went through this in 2005, how have you coped since, did you go on to have any further problems or healthy babies? I've had one good one, so I'm holding out that we can do it again, but good vibes are needed.

We're planting a tree for Rowan tomorrow, so am looking forward to that, but again, it feels like now it's over I don't have anyone to talk about it without boring them.

Let me know how you got on.

Thanks Faye

 

Faye - welcome to the forum. Sorry for everything you have been through. As you know this is a very old thread and the member hasnt been active since the day after it was posted in 2005. I've move it to the Coping with Loss board where I think you may get more replies.

 

Thanks, sorry wasn't sure how this worked.

 

It's fine - no problem at all. I just didnt want you to think the poster wasnt replying

There are other members here who have suffered losses and will be able to relate in some ways to your situation

 

Fayes, welcome to the forum and I hope it really helps u get through this tough time.

I have no real advice to give u in the way of positivity, but wanted to offer and support, I lost our first baby as a missed miscarriage on October, I was 11+6 weeks when the ERCP was carried out as I was having trouble mc naturally, baby had gone at 8+5. It has taken me a lot of time and energy to get to occasionally feelin ok, so I have no idea how u must be doing really, apart from I imagine it being harder in many different ways. We have also decided to TTC again immediately and am nearing the end of my first 'normal' cycle.

I have found the ladies on hear to be an invaluable part of my recovery, even when I'm ranting/asking questions about stuff that seems trivial but I really need to express what is gong on.

, and more

 

I am so sorry for your loss hun How devastating

I lost my 2nd son at 14 weeks (16 years ago) and went into spontaneous labour after having bled for 8 weeks. I had a 9 hour labour and he was born so small but like your son so perfectly formed. My placenta broke up and I had to go to theatre too and had a transfusion as well.

I went onto have 4 more live children and although I think of my son that I lost very frequently my heart has healed and time will heal yours too

So sorry xxx

 

wanted to pass on both hugs for you an mamafy for what youve had to go through no women should have to go through this x

 

I've just been to get our post mortum results this week. Rowan had Ellis Van Creveld syndrome.

This affect 2 live births a year in the UK. The chances of two people carrying this defective gene are 200 to 1! We're both carriers and the chances of us having another pregnancy like this is 1 in 4 or to be positive 3 in 4 chance of having a heathy child. We have a healthy 3 year old so we know we can do it.

My problem is that I need hard evidence that other families have gone on to have another healthy child, I can't find much on the internet where they have had a perfectly healthy child, there is evidence of children with milder forms. Our Rowan had a severe fatal form that was picked up at 22 weeks.

Does anyone know of anyone who has been through this?

 

My heart goes out to all of you ladies -

 

I've just found out that I am pregnant, only five weeks, but am petrified. I've never taken this quickly to fall pregnant and never thought we would within three months. I was due to give birth to Rowan this week and have this news instead. Not sure how to feel, very mixed emotions.

Am going to have to conceal the pregnancy as they may not be able to tell us if this baby has the same condition until 20 weeks like before. They may be able to tell us at 12 to 13 weeks though or at 16, so the next few months are going to be very tough.

I have a good feeling though, and as usual, I'm feeling sick already, at four weeks, so am going to just enjoy my food until next week when I will more than likely start throwing up!!!

 

Hi Fayes, I have just found and read this whole thread and I am really sorry for what you have gone through ( and Mamafy), youve had a terrible time of it these last few months. X

On a more positive note - Sooo pleased for you both on your pregnancy , wishing you a super healthy 9 months, and hope they can check out the baby for the syndrome as soon as pos , so you can relax and enjoy this pregnancy.

Make sure you join the other boards , like BFP, and 1st Trimester , as you can always talk about it on here,and bounce of each other for support, especially inportant if your hiding it in your own life until you know all is well. X Jenni

 

Hi Fayes,

Congratulations on being pregnant again and wishing you a happy and healthy nice months. I found out yesterday that I am pregnant again after a mc 2 months ago so can relate to the mixed emotions. So sorry for what ytou have gone through - it must have been awful (and I'm guessing still is sometimes).

I really and truly hope everything works out for you.
Keep in touch with us all - the support on this board is fantastic!!
Karen xx

 

I dont think anyone gets properly cared for anymore its horrid . when i lost my baby thru MC at 12 weeks i got no care or even help with counselling nothing.
I think hospitals could be alot more nice of there caring.
Congrats hun xx

 

Congratulations on your pregnancy, and I'm so, so sorry for your loss - I can't imagine how difficult the wait must be until you can find out how your baby is doing. As I'm sure they explained to you before, Ellis Van Creveld is an autosomal recessive condition, which means that both you and your partner would have to pass on the faulty gene for your baby to have any symptoms at all (as you and your partner both have one copy and are healthy, either of you passing one on would not cause any problems). I'm sure all the stats don't help you to worry any less, but I hope that this little one is in the 75% and perfectly healthy