From the outside looking in, it’s hard to understand. - Coping with pregnancy with hidden illnesses by Holly Bluck
Like many women, I knew from a young age that one day I wanted to be a mummy. Whilst it was never spoken about I had always suspected I would be unfortunate to find pregnancy very difficult if it was at all a possibility for me due to being born with a rare heart condition and undergoing heart surgery, this along with a back condition (scoliosis), and a recent diagnosis of acute supraventricular tachycardia. Whilst rarely spoken about, I knew that my family too had anxieties around me becoming pregnant and the challenges I would face should I decide to have children of my own one day. Now unless you know me well, you probably would not notice these conditions as like many illnesses they are somewhat hidden, and with little awareness and understanding around them, many do not understand how challenging it can be to live with these daily.
Despite this, and just before completing my social work degree, I found out I was expecting my first child unexpectedly. By this I mean, I was experiencing unexplained bleeding throughout the month, with the existence of bleeding I did not consider that I could have fallen pregnant. The only symptom I had been experiencing was extremely tender breasts, whilst some tenderness had always been ‘normal’ for me, this was extreme. The week before my final piece of my university work was due, I remember speaking to my partner and explaining how unusual it was, and then I started to wonder. He suggested I did a pregnancy test and straight away the results returned positive instantly.
Whilst this should have been one of the most exciting moments for me, I was filled with confusion, anxiety and stress and sat crying for hours with my friend (who was also expecting her first child). I was fortunate that my partner took the news very well and was very supportive from the get-go. However, I immediately started to become overwhelmed with fear as I had been bleeding on and off for the month so assumed something was wrong with the baby, on top of this I had my medical conditions to contend with and ‘how’ or even ‘if’ my body would cope. I was also worried about how my family would feel to the news knowing my health was up against it.
For this reason, my partner and I decided that we would not inform any of our family of friends until we had discussed with all the relevant health professionals and were past the first three months. This was particularly difficult as we were living with my partner's parents at the time. We contacted all the health professionals we needed to and I was told by my heart consultant that my pregnancy would be considered ‘high risk’ that I would need to take a daily dose of aspirin to reduce the risk of developing pre-eclampsia and need to be under the care of John Radcliffe hospital in Oxford who specialise in my condition and how this can affect myself or my baby. In addition to this, I was told there would be a risk of me passing my heart condition on to my baby, something I had never been informed of before. I felt incredibly guilty that I could pass my condition that has somewhat controlled my life to my baby. I also battled with feelings of uselessness that my body wasn’t good enough to cope and that I was putting a baby under stress who simply didn’t deserve it.
Due to the bleeding, I had experienced as mentioned earlier in the blog, I was offered an emergency scan to rule out the possibility of an ectopic pregnancy or a missed miscarriage. Due to being so early they were only able to detect the very beginning of the pregnancy and considered my pregnancy to be a ‘threatened miscarriage’ due to the bleeding I had been having. Over the course of the next few weeks, I had visited the emergency gynea clinic 4-5 times for repeat scans due to random bleeding I had experienced. When I am talking bleeding I am not referring to spotting or a light period, I am talking heavy clotting that had gone through underwear, clothing and bedding. During this time, I was also sent a letter from the hospital stating I had symptoms of cervical cancer and that I was placed on a two-week waiting list to be seen by a specialist due to unexplained bleeding I had. By this point I was completely beside myself, I had still not told any of my family I was expecting and I had sat with my mum and dad and shown them the letter, they tried to reassure me that if my issues were anything sinister they could treat it quickly. It was at this point I cracked and blurted out whilst crying that it was not that simple as I was expecting. Not exactly the way I intended to share my news with them!
Nonetheless, my parents took the news well but I could see the worry in their eyes, my mum started to consider her options of taking time off work should I be ill and need her support. Of course, this new scare was all on top of my existing conditions that had now taken a back seat to the new worries I was now facing. Having done the one thing everyone tells you not to ‘googling symptoms’ I was convinced I would end up losing our baby and I struggled week by week expecting the worst to happen. We paid for private scans to try and put my mind at ease but would make myself feel physically sick with anxiety and worry each time expecting them to tell me there was something wrong. I felt saddened that I could not enjoy what should have been special moments. I continued to bleed until I was 21 weeks pregnant with each new ‘rush of blood’ resulting in another scan for them to ensure my pregnancy was still viable. Each time they were unable to find or provide an explanation for the bleeding but could only reassure me that my baby appeared to be developing well. I was told over and over again by family members and friends to be more ‘positive’ to ‘lighten up’ or to stop overthinking. Two of my so-called best friends even fell out with me for being ‘draining’ and for always having something wrong with me. I struggled at times to get motivated, to get out of bed and live daily life, I felt alone and like a bad person for not ‘handling’ things like everyone expected me to. I even had moments of doubts of whether I should have continued with my pregnancy (although I am so very glad now that I did).
At 21 weeks, I bled badly again and was asked to go straight in to be scanned, it was then that the sonographer identified a bleed outside my pregnancy. They explained this as a graze outside the womb that did not affect the pregnancy and that this may or may not heal. It was then the scare for cervical cancer was alleviated and I could then concentrate on my pregnancy and other hurdles I was yet to face. This happened to be the last time I bled to date and thankfully our baby seems to be doing well.
Unfortunately, with my partner being self-employed I have had to attend the majority of appointments alone or with friends which at times has been gruelling and frustrating. I have and continue to have several appointments in Oxford with a number of consultants, including fetal echo’s to check my baby’s heart however been told they cannot confirm if my baby will inherit my condition until after birth. This is on top of seeing a consultant in my hometown in case I was to spontaneously go into labour and not be able to reach Oxford. I also have a midwife in my hometown and specialist midwives in Oxford. In total, I have on average 10 appointments per month which are likely to increase towards the end of the pregnancy. I have also been advised that I need to deliver my baby in Oxford (should I manage to travel there in time being over an hour and half away), and until 28 weeks was told this would be by C-section, however, the professionals have now decided it is less risky for me to attempt natural birth eekkkk!!! I was no way prepared for that!! I am still waiting for an anaesthetist to consider what, if any pain relief I can have (due to my heart and back condition) and if I was to need an emergency C-section how this would be performed, as there are concerns they will be unable to administer any pain relief of spinal’s in my back due to my scoliosis. However, at nearly 32 weeks pregnant and my track record for bad luck I am getting anxious about not having a plan in place yet! These extra appointments can be an absolute pain, and some days I have spent 8 hours in Oxford being seen by different people. Sometimes I have felt frustrated and fed up with professionals and the amount of appointments and time this takes up, but ultimately I cannot thank the NHS enough so far for their support and their hard work in keeping a close eye on us and in planning delivery to ensure my baby and I are safe.
Despite all the challenges I have been faced with, I have begun to have an easier ride with my pregnancy (better late than never I suppose). I still suffer from aches and pains daily and difficulty moving, I have also developed sciatica and at times been completely immobile, I get heartburn every day that bad that I wake up choking on my own stomach acid (yeah gross I know). I get pain in my ribs like I am being torn apart, but in comparison to the other issues I have been faced with earlier on, it is manageable. So hold on in there, if you have experienced anything like me I hope it eases for you soon too!
As you can see my pregnancy so far has been challenging, to say the least, it has put me and my partner through our paces. Whilst I still very much consider myself extremely lucky to be pregnant and for my baby to be developing well, I have had times where I have felt negative and expected the worst. I have at times struggled to smile or to laugh like the ‘normal’ Holly would have and I have lost people I had considered to be close and true friends, people that have judged me for not being overjoyed with being pregnant or finding it difficult to see any positives in my circumstances.
Throughout my experience so far it has become extremely obvious to me that for those looking in from the outside, who have not experienced difficulties like mine or similar or cannot see it due to being somewhat ‘invisible’, it is difficult for them to understand. This can make you feel completely alone, and I write this blog to raise awareness that we are not all fortunate to have a Rosie and plain sailing pregnancy and this can lead you to feel deflated and utterly fed up. With society being so focused on the woman who are so devastatingly unable to have children or to lose their children during or soon after pregnancy it seems to have become a taboo for women to express their unhappiness or difficulties in their pregnancies for fear of being tarnished ‘ungrateful’ for the opportunity you have been given which so many wish for. This, however, does not make you less or a ‘bad’ person for not enjoying every second of your pregnancy (like so many expect you to), it does not mean that when your baby is born you will not be a good mother. It does not mean that you are not good enough. Pregnancy is one of the most challenging, life-changing and scary experiences, on top of all those lovely hormones to contend with so if you have additional challenges like me, please know you are not alone and it is ‘OK’ not to be ‘OK’ sometimes.
If you having a rough time, I hope things ease up for you and wish you and your baby all the best.
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