premature birth · The world of an ordinary mummy · Uncategorized

5 Stages Of Acceptance – High Risk Pregnancy

31 weeks pregnant with MoMo twins, 1 week before delivery.

We found out we were carrying twins at just 9 weeks following an ectopic pregnancy scare and instead of feeling worried about how we would cope with a two year old and newborn twins we felt excited and actually calm. How we would afford it, how we would manage, how the hell I would carry twins for 9 months, none of that was certain but what was certain was we would have three beautiful children, our family would be complete and we were delighted.

At our 16 week consultant appointment we were told our twins were Monochronic Monoamniotic, MCMA or MoMo as they are also known, meaning they shared a placenta and amniotic sac with no dividing membrane. Knowing nothing about twin pregnancies we weren’t sure what this all really meant but as the consultant started to explain the risks and as she broke the news the babies would be delivered by c-section no later than 32 weeks we started to realise that this was no normal twin pregnancy and nothing was certain anymore.

The main complication with MoMo twins is that as they grow and move around in the womb their umbilical cords become twisted and knotted together so as they get bigger the pressure on the cords can decrease and stop the blood flow to one or indeed both babies at any moment. Official figures say the chance of MoMo twins surviving inside the womb is just 50% and there is no possible medical intervention other than monitoring.

As the realisation of what could happen began to hit us we started a journey through several phases of acceptance.

1. Disbelief

I read medical papers and scientific studies, I joined support groups, I contacted NICE and I even wrote to the hospital pleading with them to monitor my babies more frequently. “There must be something that can be done, it’s the 21st century they can’t just leave us to wait and see if our babies live or die!” I put all of my energy into finding a solution that would protect my children and deliver them to me safe and sound so when I realised there really was nothing that could be done and I had no power over the situation I felt helpless and as though I had failed my babies.

2. Anger 

We tried to explain to family and friends what could happen and what we were living through but there is no possible way anyone could truly understand. My anger at the situation manifested itself in anger at those who love me “they don’t get it, they don’t care, why don’t they cry like me, why aren’t they scared, why don’t they ask more questions” of course I know now that they were trying to stay strong, to support me and my husband but at the time nothing they did or said was right. 

I had a conversation with my father whom I love dearly and he said “there’s nothing you can do, nature will take its course and I know you don’t want to hear that but it’s true, it’s all up to nature now”. I couldn’t bear to hear that I felt like he didn’t understand and his words cut through to my sole. I was so full of anger that I couldn’t see the truth.

3. Isolation

In the end my husband and I cocooned ourselves in one another, in our fear, our grief for what could be and the pregnancy we were missing out on, in our overwhelming love for our babies and each other and in our living hell. We cut ourselves off from all but a handful of friends and we spent every evening on our support group reading MoMo success stories and asking questions to the families across the world living through the same thing.
It was only with one another that we felt understood, that we felt a glimmer of hope and only with one another that we could be truly honest about the fears we had for our unborn children.

4. Acceptance

At some point between anger and sadness I finally accepted there was nothing I could do, there was no way to protect my babies, no way to make everything OK. My father had been right when he said with love that nature would decide. I realised that sometimes things are out of our control and as human beings used to influencing so much in our lives this is a hard thing to accept. Bizarrely this thought now brought me some comfort as I could stop fighting, stop being angry at what I could not change and instead I could focus on surviving the hell we were living so that I was ready for the journey through neo natal with my tiny miracle babies.

We took the decision to find out we were having boys and we named them, we told our friends and family their names so that if we were to lose them they were people, real in everyone’s eyes and not just ours. We brought clothes and nursery furniture, a pram and car seats because having those things around me brought some normality to the situation, this wouldn’t be everyone’s approach but in a small way it helped.

5. Sadness

Our self-isolation allowed us to embrace our sadness and let go of the anger. I carried two of the most precious things in the world to us inside of me and I was powerless to protect them. From the moment our babies were conceived I loved them, they were children to me as real as my little boy who was growing so fast and was so excited to be a big brother. I would die for them just as I would him and not being able to keep them safe was torture. With every movement I felt comforted as I knew they were still alive, yet every kick also brought with it the fear that they were becoming more entangled and knotted in their cords. Every second of every day was a mental hurdle that was physically and emotionally exhausting.

On particularly dark days when I allowed my mind to wonder into the realm of ‘what if’, I found myself sat at the grave side of my beautiful babies and I would weep for a loss that had not yet been but could at any moment become a reality. Sadness and grief for what could be and what we had lost in terms of the delight of pregnancy and the assumption of holding your babies at the end of it became part of my daily existence. Slowly I became a shell of who I had been but we kept moving forward, putting one foot in front of the other wishing away the days until the boys would be born and they would be safe.

Birth

Finally after an agonising pregnancy our boys arrived by emergency c-section at 31+2 weeks. Their cords were a ball of twists and knots and we were told if I had not gone into early labour and we had waited until 32 weeks we may have lost twin one. As I lay on the operating table catching a glimpse of my tiny miracles for the first time I was overwhelmed with relief and happiness. Neo natal held no fear for us and we would overcome whatever their early arrival meant in the long term, all that mattered was they had survived the time bomb of my womb and their one amniotic sac. I threw my head back and screamed “they’re safe, it’s over, it’s over, IT’S OVER!” and looking at my husband only we knew and would ever know what we had endured and what a precious miracle and gift our sons were.

There is no moral to this blog post, no nice bow I can tie it up in or advice I can give to help someone else cope. High risk pregnancy can be a painful process with an uncertain outcome but as with all of my blog posts I simply hope that my honesty can help others know that what they are feeling is normal and that they are not alone. The human spirit and love is an immensely powerful thing, it will pull you through the darkest of times and heal the deepest of scars.

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5 thoughts on “5 Stages Of Acceptance – High Risk Pregnancy

  1. After my first son was delivered by emergency c-section at 32 weeks (he suffered IUGR resulting from reduced blood flow through placenta and umbilical cord), my second pregnancy was treated as high risk right from the start. As we didn’t know what had caused the placental issues in my first pregnancy, we were told we just couldn’t predict it would or wouldn’t happen again. I found the whole of my pregnancy extremely difficult, not being made any easier when I was told my baby was 1 in 30 chance of being Downs Syndrome. After amniocentesis it turned out he wasn’t but the thought that I could have to potentially deal with another premmie baby who was also Downs was overwhelming. Especially as at the same time we got news that our eldest son has a high chance of being autistic as well. I to felt that my body has failed my children and wondered just how on earth we would cope. After the all clear on the Downs, I got a couple of weeks break before problems with my placenta started to surface. At least this time we were prepared, as with our first we were unaware and it was only a routine scan ( not many get a scan at 32 weeks) that showed my son was in serious trouble and he was delivered within a few hours. The doctors told me they didn’t think he would have survived another 12 hours inside. Such a shock and an abrupt ending to my pregnancy, and of course we were not at all prepared for the tiny 2 lbs 14oz baby that entered our lives and was rushed away at birth without me even seeing him. By the time I got to 28 weeks pregnancy with my second child it was evident that history was repeating itself and I wasn’t going to get much further in the pregnancy, despite being given steroids and being signed off work so I could rest as much as possible. At 31 + 2 days they decided that it was better for my baby to be outside rather than in, and my second son was born weighing 3 lbs 4oz. The shock wasn’t there at his birth but I felt an overwhelming sadness that my pregnancy had ended in that same way. There was relief that he was out and I could hand him over for the doctors to try and keep him alive- that pressure was no longer on my body. But I also knew how hard the next few weeks/months were going to be as I would have to leave him and do the emotional roller coaster of a nicu stay again. When I couldn’t help a few tears escaping at his birth they were tears of acceptance and resigning myself to the fact that I would never have that joy and excitement of a normal birth. With both my sons people understandably found it very hard to offer congratulations at the births. I had tried to be realistic all the way through my second pregnancy and make sure those around me were as well- I was given no guarantees of the outcome of the pregnancy. I differed in my approach to dealing with this- I didn’t want anything bought for the baby until it was safely here. I couldn’t stand the thought of a load of clothes or other items sat there for a baby that might not ever live to use them. I’d kept a lot of things from my first son so I knew we’d have enough to cope, but they were bought for him and had been used for him so it didn’t feel like I was deliberately preparing for a baby I might not ever get to meet by having those things. We did find out his sex and named him as I wanted to feel like I knew the little person inside me and for him not just to be a medical case or ‘baby’. We saw him in enough scans- I’m a veterinary nurse and used to looking at ultrasound images so at some point I would probably have been able to see he was a boy anyway! I knew that the second time around was going to be hard but it was even harder than I had thought. Hugo suffered respiratory distress syndrome and he caught and infection. At one point it really seemed like he’d never come off the oxygen support. It was hard juggling care and support for my 3 year old as well. I always felt guilty that I wasn’t spending enough time with either of them. Somehow we got through it and my second son is now 20 weeks actual age. He came out of hospital at 5 1/2 weeks, although we’re back in again next week as he needs an operation. I know that having a child is a life changing experience for anyone, but I know that the experiences I’ve had with my 2 boys will never leave me. I’ve been strongly advised not to have any more children as I’m unlikely to ever carry to term, so there’s some things in just going to have to accept. I’m never going to experience labour, feel the satisfaction of pushing a baby into the world, of holding that newborn in my arms, having excited friends and family rushing over with balloons and wanting to hold that newborn themselves. I have to live with the constant corrections and adjustments that come with premmie babies and tracking their growth and development. And when people ask how old your baby is, I know I’m going to have to explain yet again why he’s so small. While my heart yearns for a ‘normal’ experience of parenthood, I still have to be so so thankful for what I have. Yes, I have things to come to terms with, but I still view myself as being so very lucky. For a woman that can not carry to term, I’ve not done too badly and have 2 beautiful boys to show for it. Things could have easily been so much worse. Sorry for going on, this blog really spoke to me though. It was so hard to explain to people what it was like going through my second pregnancy and of having that title of high risk. That was even though we knew 3 years previously after the birth of Finlay that any other pregnancies would be treated as high risk (they didn’t advise no more babies after Finlay as they have now done after Hugo) . If I did fall pregnant again ( I’m in no rush to put my mind or body through that hell again by the way) , it makes me wonder if there’s a further category entitled super high risk for those people you know are going to have problems and will need intervention! I guess I’ll leave that for some other poor woman to find out. Xxx

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