After years of IVF, 2 failed cycles, 7 failed transfers and 3 miscarriages my wife got pregnant off the last remaining embyro. We had 3 months of worrying and our 12 week scan yesterday, which unfortunately showed a number of issues and abnormalities.
Today we are sat in UCL hospital fetal medicine unit awaiting scans. We were referred yesterday by our local hospital. The team are world class and set the standards and are innovators, and we are seeing the foremost expert in his field in the UK. You might hear stories about the NHS but every example I know of serious issues (cardiac/cancer/this) has seen the patient treated incredibly quickly.
I’m not expecting a happy ending here. The symptoms are close to Patou or Edwards Syndrome but we haven’t told family or friends about the pregnancy yet and needed to get it off my chest. If we’re lucky it may be just bladder extrophy or an omphalocele and that’s correctible by modern medicine but that’s the best case scenario.
Googling the medical terms above will be upsetting so I’ll warn readers now.
Edit : Thanks to Tom for moving this into its own thread.
It’s something called Body Stalk Anomaly. It’s an ultra rare development condition close to spina bifida. Most organs are outside the body and there is no umbilical cord as the baby is attached directly to the placenta. It’s lethal. Now we’re going to have to make some very very difficult choices about how to continue. From the looks of things it’s so rare there aren’t even support groups or charities to get more info. Now steeling myself for a tough few months.
Dude, I don’t think there is anything I have to offer except my sympathies and the fact that I can keep you and your family in my prayers during this time.
I hope for the best in all of this for you. I don’t know what that might be though.
I cannot even imagine what you and your wife are going through.
I Googled the condition, and your brief description seems spot-on, unfortunately.
Wishing you guys the best seems totally an inadequate thing to say, but I sincerely mean it. Right now, I’m wishing I were a better writer, but words fail me.
Is there any hope at all?
So sad. I hope you can be a rock of steady “we’ll get through this” and a warm blanket of care and love for your woman. We’ll try to be those things for you as best as we can, right guys?
I’m afraid not. It’s a condition “incompatible with life” to quote the handful of research papers that turn up in google searches. The technology to re-engineer a body back to about 0-9 weeks development (it happened sometime during that) and rebuild correctly is Star Trek, not reality. However, the tech is really something. We also were able to see the fertilised egg and then embryo/blastocyst. We had a 3 week scan in which we were warned that the sac was a little large and some issues around size/growth rates and a potential miscarriage/bleed which turned out to be a haematoma elsewhere early May. A further 9 week and 10 week scan too but everything seemed fine at that point. We really were able to see an amazing level of detail during development due to IVF and medical tech and none of it would have foreseen or stopped this.
We have a child mourning routine now from 3 miscarriages. Each time we learn from the previous. We’re off for the next few weeks anyway. It’s a balance of weeping and hugging, planning and keeping busy and occupied but we havent reached the difficult bit yet and the lifetime afterwards is a wall to be scaled.
The religion question is interesting.
My wife’s family is religious, Catholic and vocal on issues around abortion. My wife isn’t religious, but works with people with disabilities, and we have already had the conversation about having no problems with any chromosomal or physical condition we would be pre-warned about, up to and included Downs and lesser cases of Patou and Edwards. I’m not religious in the slightest. I’m pragmatic which is probably reflected in my tone and matter-of-factness on this. My wife mentioned two choices to her father, miscarriage happens naturally or it goes to term and is a c-section and he suggested “doing something sooner” which was just amazing as it removed so much worries my wife had on family arising from this. What was not mentioned, c-section also offers complications due to hospitals legal duty of care, and the ability of medical equipment to keep a baby alive that is missing multiple organs and a whole raft of ethical and moral issues more suited to P&R threads where no doubt in the future I’ll be able to comment with experience and a personal lens. In addition, months of baby bump and “congratulations” from everyone my wife meets? Can you imagine that?
Today we’ve found out that we can use the hospital birthing centre a less harsh medical environment, hold the baby, take photos, imprints etc and also arrange a funeral. We couldn’t do this with the miscarriages as they were earlier. I already know it will help with the healing process as we missed it previously. We’re also doing some more scans and getting heartbeat recorded this weekend. More things we wished we had before.
If i was talking face to face i couldnt get to the end of the first sentence without cracking up but its helpful to type away and list out all the things im trying to put together in my head.
I still remember vividly getting the call from a routine checkup during my ex-wife’s first pregnancy: “There’s no heart beat” and the floor dropping out from under me even though it’s not unusual, even though it was still early in the pregnancy. Hard to imagine going through that time after time. We really need to do a better drop as a culture grieving this kind of thing. It can be emotionally devastating, and we need to talk about it more and support each other more. Thank you for sharing your grief with us, a bunch of strangers on the internet, and I hope the knowledge that we’re all thinking of you and wishing you the best is some small comfort.
The reason I asked about religion is more of a philosophical nature.
See, for a believer awful tragedies such as this is Gods unknowable way. She can find solace in believing there is divine reason for what befalls her.
On the other hand an unbeliever like me (and you?) can only logically see this as the great random universe utterly randomly smiting you with a random amount of woe.
It is absurd and senseless and far harder to cope with than a theist would have it. There is no reason to it (or anything really) and that can feel very cold and lonely and vulnerable.
Anyway. We all live in this cold and absurd universe so lets huddle up in our cave, stoke the fire and sing the songs of our people.
I’m so sorry to hear what you’re going through. You and your wife are in my thoughts for sure.
My wife and I went through years trying to have a viable fetus. She has an immune disease that caused blood clots in the placenta that would eventually cause a miscarriage. She had… I think… 7 miscarriages. The first couple at 4 months or so. It sounds like the hospital experience is much better for you than it was for us. Her first miscarriage, she was put in the maternity ward while they gave her drugs to expel the (dead) fetus. Imagine being surrounded by people with new babies when your heart is breaking.
Other people are also shitty at dealing with this. Once at church, a woman asked my wife if she had any “unconfessed sin” that might have caused the miscarriages. So yeah, there was that.
Take time to heal… the physical and emotional toll is enormous, especially for the woman. Hold on to your wife tight, for you both will need the support. It will take time. But you can get past this. I’ve gotten past our experiences. My wife has too. But we’ve not gotten over them, and I still choke up at times thinking about it (30 years later, and even while typing this).
Sorry to read about this. My wife is the one who is good with kind words in these situations. I can only grimace, listen carefully and hope it reads as sympathetic.
Are people good about bringing you all meals and whatnot?
