The Pregnancy

SEASON 1 - EPISODE 1

This is the true, raw experience of what I went through mentally, emotionally and physically when I gave birth to my little boy Louis with Down syndrome. It might shock and upset some people, or perhaps resonate with those who have had a similar experience. I can’t change how I dealt with my experience, or how I felt at the time, but I eventually reached a place where I forgave myself for those feelings, released the burden of guilt, and embraced everything I went through. It was a process I had to go through — sometimes you have to break down to break through.

I didn’t have an easy pregnancy with Louis. In fact, it was pretty awful. From early on in the pregnancy I had morning sickness, which turned into morning, afternoon and evening sickness.

I also developed gestational diabetes, which was pretty surprising considering I was a very fit person with a low BMI. I ate well and didn’t consume lots of sugar, but this can be common if you have a parent with diabetes — which I do. With this diagnosis began the daily routine of checking my blood sugar levels and having to inject myself with insulin. The diabetes left me feeling very tired and pretty rough day in, day out.(For more information on gestational diabetes please click on the link: https://www.nhs.uk/conditions/gestational-diabetes/)

I then started to experience severe pain in my pelvic area, to the point where I could not walk without being in chronic pain. I was diagnosed with SPD (Symphysis Pubis Dysfunction), a condition where your body produces too much relaxin during pregnancy, causing the ligaments in the pubic bone area to overstretch and resulting in severe pain. I ended up having to use crutches and also a wheelchair, which was totally inconvenient when trying to look after a toddler.(For help and more information on this condition, please click on the link: https://www.healthline.com/health/symphisis-pubis-dysfunction)

I will never know if the reason for all the pregnancy problems I experienced were due to Louis’ condition or if it was just coincidence, but I didn’t have any of these problems with my first pregnancy.

During a long, sickly seven and a half months into my pregnancy, I started to feel unwell and sensed that something wasn’t right. I was admitted into hospital where they took my bloods and discovered that my liver readings were not as they should have been. I was closely monitored, but my readings were not improving. Towards the end of the week I couldn’t feel Louis moving around very much, so I was monitored three to four times a day to check his heart rate and movements.

Eventually, the doctors decided it was safer to deliver him, and an emergency caesarean section was arranged for that day — six weeks before my due date.

I was relieved in a way, knowing that I would soon be out of so much pain and that I would finally be meeting my baby, albeit six weeks early. I also couldn’t wait to be able to eat some cake.

I was taken down to surgery for the caesarean section, which was very controlled and calm, although I was incredibly nervous. Everything went well and baby Louis was delivered. The doctors took him away to be checked over, and I was also attended to. I was eventually wheeled to the recovery room with Louis beside me in a crib. At this point I had not held Louis or really seen him, as I had uncontrollable shaking in my arms due to the drugs used during the caesarean section. The nurses gave me toast and jam to try to stabilise my blood sugar levels so the shaking would stop and I could eventually hold Louis.

As I was eating and recovering, two doctors approached Louis and myself and introduced themselves. They then proceeded to say, “We suspect that your baby has Down syndrome.”It was blunt and totally out of the blue. It felt brutal, a robotic and uncompassionate delivery of such news, with no consideration of how the diagnosis might affect me, or even whether I had held my baby. It was just too much. If only they had let me hold him first, looked into his eyes and fallen in love with him rather than the diagnosis, I think my journey and my acceptance would have been so much easier. I felt that the doctors had stolen what should have been a very special moment of bonding between myself and my son.

I felt like a shutter had closed down over me. I went into total denial and felt as though they were talking to somebody else. I felt completely disconnected from Louis and could not comprehend what was happening. The shock was immense.

Here I was, after a horrendous pregnancy and an emergency caesarean section, just wanting to hold my baby, only to be told of a diagnosis before I had even properly looked at him or held him. Something broke inside me and I felt totally numb. I remember being wheeled to a private room and seeing the lights overhead flashing by. Tears were falling from my eyes and I felt total despair, fear and anxiety. I kept thinking it was a dream and that I would wake up soon.

From then on, there was a constant stream of doctors and nurses, and tests being done on Louis. He had jaundice and was placed in a special incubator. Blood was taken to confirm a definite diagnosis, but I was told he had markers associated with Down syndrome, such as low muscle tone, a larger gap between his big toe and second toe, and slightly slanted eyes.

I eventually got to hold Louis once I had recovered from the drugs, but all I could see was the diagnosis. I didn’t see the child I had grown inside me and had been so desperate to meet. I swung between crying and fear, moments of positivity and protectiveness, and then overwhelming fear gripping me again.

That first week in hospital was the most isolating and mentally crippling experience of my life. The nights were horrendous. I couldn’t sleep and was prescribed sleeping tablets, which didn’t help. I would wake up thinking it had all been a dream, only to realise it wasn’t. I had constant flashbacks of the flashing lights overhead and hearing the doctor’s words. I felt like I was going mad. I experienced continual emotional rollercoasters, my mind was scrambled, and physically I was unable to do much due to the caesarean section. I could hear other babies crying and would wonder what I had done wrong to have a child with a disability.

There was nobody to talk to, no support, and nobody who could understand what I was feeling. I remember howling, with never-ending tears rolling down my face.

Louis and I were discharged from hospital around seven days after his birth. The thought of going home felt daunting, given how fragile I felt mentally and how unsure I was about coping. I was desperate to see my elder son and feel some sense of normality again, but that took a long time.

Which leads me on to the early days…