Two part post – Thursday 25th August 2016
In the last post I mentioned we were going to be having an amniodrainage. The drainage went well. A whopping 4.1 litres was drained from the swimming pool. Prior to the drainage we had a scan in which Bear didn’t move. I wasn’t concerned, I had felt movement while we were in the waiting room, however the consultant was called into the room and started talking to us about him being concerned that Bear may have congenital myotonic dystrophy in which case it would probably never breathe at birth due to lack of intercostal muscles. This threw us in a spin as he was going off a two minute scan where in all likelihood the baby was probably asleep. He went ahead with the drainage and by the end of the procedure we saw some movements and breathing motions which the consultant was happy with. We nicknamed that consultant Dr Death for putting the fear of God into us and after doing some research I found that congenital myotonic dystrophy is tested for in standard PGD testing and as Bear had PGD testing when it was a tiny embryo we knew that it wasn’t possible for it to have this condition.
After the procedure I did begin contracting but by early evening we were able to stop the labour using nifedipine. During the night I didn’t feel any movements so we had a CTG the next morning which did show Bear was moving. Yay! I’ve never really felt Bear move much. At first I put it down to having an anterior placenta. The placenta is sitting on the front of my uterus so it’s blocking most of the kicks I should have been feeling. Then when I was diagnosed with polyhydramnios this gave me another explanation for the lack of me feeling Bear move. I had always felt movements down low during the evenings but I had never felt any strong kicks. Again, I explained it away due to the placental location and the polyhydramnios. Since we had 4.1ltrs drained however, I figured that I should start feeling Bear move more. Many times during the day I could feel noticeable lumps in my belly where Bear would stick it’s knee out or stretch it’s feet to the top of my uterus, but again – no big movements. I finally put it down to Bear being a quiet baby and thought nothing more of it. We had a follow up scan booked for this Wednesday and I went along by myself this time. Marian and David had come up for the drainage but had gone home to prepare for their long drive up this weekend to stay for the remainder of the pregnancy. The scan seemed to go well but again the sonographer noticed that Bear didn’t move at all during the 20 minute scan. She said to me she had some concerns and she would go and get the consultant to come and have a look and see what he thought. Dr Death wasn’t at work on Tuesday for which I was grateful as I didn’t want another conversation that was all doom and gloom so another consultant I had seen earlier in the pregnancy came in and asked to scan me.
He asked me again about movements and I told him Bear had always been quiet. He asked if anyone had mentioned myotonic dystrophy to us before and I said yes, but Bear had PGD testing which ruled it out. He then inquired whether the PGD testing included Spinal Muscular Atrophy (SMA). I honestly didn’t know. He pointed out a few worrying things he was seeing on the scan that gave him some real concerns. Lack of movement was one, also lack of breathing motions which babies tend to do a lot of at this gestation. Then he showed me how Bear had a thickened layer of subcutaneous fat on it’s legs with next to no differentiation of muscle mass. In short it appears that there is next to no muscle at all on Bear’s legs. He said this paired with the polyhydramnios makes him almost certain that Bear does in fact have a form of muscular dystrophy and in terms of outcomes, it’s very bleak. As Dr Death told us, Bear will likely never breathe on it’s own. He went on to explain that even if it’s not SMA and PGD testing has ruled it out, the signs of some form of muscular dystophy are there and can’t be ignored. Further there are so many forms of muscular dystrophy that they can’t test for them all in PGD testing and it’s likely that Bear has a very rare form that isn’t included in standard testing. He apologised that this hadn’t been picked up already but mentioned that it’s often not diagnosed in pregnancy but because we’ve had repeated scans, the pattern has emerged that shows all is not well with Bear. His next words were like a lance through my chest “I have been wrong before and I hope in this case I am, but if I’m being realistic, the signs are there and I can’t ignore them”.
At that point I really didn’t want to fall apart, but I couldn’t help it. I didn’t want to be that woman you hear sobbing behind a closed curtain that leaves you wondering what bad news has just been delivered but that was me. I wanted to hold out until I was alone or until Simon was with me in private so I could just let go but you find yourself restraining yourself because you’re in a hospital with thousands of people waiting around. In the room next to me I heard a sonographer telling a little girl that she was going to have a baby sister and the excited conversations the parents were having with her and meanwhile I had just been told that Bear probably would not even live a minute, an hour or a day. And at that point the burden was all mine, I was the only one in our team that knew. How was I supposed to tell Marian and David? There was no way I could physically call them but it seems such horrible news to put in a text. The next half an hour was taken up by more appointments being made and waiting for the ultrasound report while quietly shedding a few tears and trying to hold it together. I texted Simon first and he left work to meet me at home. Then I bit the bullet and group texted Marian and David that life as they knew it would be irrecoverably changed from that moment on. Marian’s first reply was that she was sorry that I had to find out on my own. That’s a testament to the type of selfless person Marian is, always concerned about others before herself. I knew no matter what happened we would get through it together.
I managed to make it to the car park before I completely lost it in what I can only explain was utter grief mixed with a panic attack. I felt like I couldn’t get enough air as I sobbed to the unfairness of it all. Up until now, apart from the polyhydramnios we have had the perfect journey. We ticked all the right boxes, we did all the right things and still we have this outcome. Marian and David decided on PGD testing when they found out they would have to do surrogacy because they wanted to make sure only the healthiest embryo was transferred so we were never faced with this type of outcome, and yet despite careful planning here we are. It’s no one’s fault, there are no feelings of guilt on my part and I hope there aren’t any on Marian and David’s part either, it’s just one of those ‘unfortunate things’. One of those unfortunate things that turn your life upside down and leave you feeling like a shell of the person you once were. By the time Simon got home I realised what a wasted effort crying is and wonder why we even do it? It hurts your head, your heart, your eyes and lets face it, the fluid you loose from it could be better used elsewhere in the body. Despite knowing it’s a useless act I can’t seem to stop doing it for any decent length of time despite my best efforts to distract myself. And then there are all the thoughts you just can’t switch off. What the hell do we do now? We know this information but there’s nothing we can do about it. Now instead of preparing for an amazing life event, we’re preparing for the possibility that everything we had hoped and dreamed of will never happen. All the clothes hanging in Bear’s closet will go unused, it’s cot unslept in and worst of all Marian and David won’t have that proud parenting moment of introducing their new bundle of joy to their family and friends. It sounds so juvenile to say, but it’s just not fair. At this point I would like to extend a big fuck you to the universe for putting us in this position.
I know there are various stages to grief but I just want to be at acceptance already. I want to feel like I did this morning when I woke at 3am and in that split second between sleep and consciousness I felt nothing until the events of the day before come flooding back into my mind and left me crying so much I woke up Simon. Whatever happens in the next few months I know we will be well supported and Bear will be showered in more love than anyone has ever felt no matter how short it’s life is. And Marian and David are going to be the best parents ever.
Saturday 27th August 2016
It’s hard to believe that we have known the news for only a few short days. It feels like time has stood still and years have passed at the same time. I finally got some good solid sleep last night and feel a little stronger for it today. I know some days will be easier than others and some days will seem utterly devastating so I’m just taking each day as it comes. Usually at this part of pregnancy I’m wishing away the days until the birth so I can have my body back. This time I can hear a clock ticking ever so loudly and every second that passes is one second less time we have with Bear. I think it’s cruel that I’ve had Bear to myself all this time and Marian and David will only have a few short precious moments. After doing some research I have found a few personal stories where babies with SMA have lived from anywhere from a few minutes to a few months. No time in the world will ever be enough but as an amazing friend and colleague has said to me, Bear will decide how much time we have with him or her and we will just have to accept that.
Another beautiful surrogate friend of mine has told me that crying is not pointless. Crying is the way your eyes speak, when your mouth cannot explain how broken your heart is. Nothing can sum up how I feel when I cry more than that sentence. I have given up trying to be strong and keep my sadness at bay. I decided it’s ok not to be strong, it’s ok to completely fall apart and scream and swear – though I’ve stopped short of breaking things. Swearing gives me a surprising amount of satisfaction. Fuckity fuck fuck fuck it. Fuck this situation, fuck this shitty feeling and fuck the universe for doing this to Bear.
I have found distractions are also helping. Getting out of the house keeps me busy for a few hours everyday. There are still times I’m out where I break though like yesterday when I went to the shops and I saw everyone around me going about their day without a care in the world and all I could think was tick tock, Bear’s time is running out. I saw a few women with newborn babies and I thought – they have no idea how lucky they are. At that point I nearly turned around and walked back to the car, but I told myself I couldn’t avoid these situations forever, so kept going.
Marian got in touch with Repromed to find out what they actually tested for with the PGD testing done on Bear. PGD testing is touted as a way to make sure only the best genetic embryo is transferred into the uterus by ‘allow(ing) us to look at all chromosomes present in the embryo, meaning we can make a more informed decision about which embryo to transfer’. In reality all it does is make sure the correct number of chromosomes are present and doesn’t actually check those chromosomes for abnormalities like we thought it did. I feel like we’ve been deceived into a false sense of security. Yes PGD testing can check for SMA but only if they know to look for it because there are simply too many genetic abnormalities to check for them all. So I extend another big fuck you to standardised PGD testing.
I have to say a big thank you to everyone who has been in touch over the last few days. You’ve each lent me a little bit of strength to get through the days. You all know who you are. To Simon who has been there in my messiest moments to simply listen to me blubber and dish out the best hugs ever, you’re my rock and I love you more than words. I apologise to anyone whom we haven’t told in person. It simply seems like too much to individually contact those closest to us as I relive the same thoughts and feelings over and over, so we have decided to use this blog as a way to share Bear’s news. Also a thank you to Marian and David’s friends and family who have helped them these last few days with love, flowers and cookies. I feel horrible that Marian and David will be so far away from you all during this difficult time and you may never met Bear, but they reassure me you will all be there through messages and the wonders of technology for which I’m grateful for. Lastly I have to thank Marian and David. When people get this type of news it’s so easy to retreat into yourselves and shut out the outside world. Instead they have included me in all their thoughts and feelings and kept up an incredible amount of communication which has also helped me immensely. We are totally gonna get through this together <3