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’s Syndrome.  It might shock and upset some people, or perhaps resonate with people who may 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 and the burden of the guilt I felt and embraced everything I went through.  It was a process I had to go through, sometimes you have to break down to break through.

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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 have severe pain in my pelvic area to the point when I could not walk without being in chronic pain.  I was diagnosed with SPD (Symphysis Pubis Dysfunction) this is where your body produces too much relaxin during your pregnancy and the ligaments in your pubic bone area over stretch causing severe pain.  I ended up having to use crutches and also having to use 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 of the pregnancy problems I had 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 7 1/2 months into my pregnancy,  I started to feel unwell and sensed 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 much, so I  was linked up and monitored 3-4 times a day to see how he was doing with his heart rate and movements.  Eventually the doctors decided that it was safer to deliver him, and an emergency caesarean section was decided for that day “6 weeks before my due date”.

I was so relieved in a way knowing that I would eventually to be out of so much pain and soon to be meeting my baby and 6 weeks early! I also couldn’t wait to be able to eat some cake!

I was taken down to surgery for the cesarian section which was all very controlled and relaxed but obviously I was incredibly nervous.  All went well and baby Louis was delivered.  All seemed to be ok, the doctors took Louis away to be checked over and I was also attended to.  I was eventually wheeled to the recovery room and Louis was beside me in a crib.  At this point I had not held Louis or even really seen him as I had uncontrollable shaking in my arms due to the drugs used during the cesarian section.  The nurses gave me toast and jam to try to get my sugar levels to a substantial level so I could stop the shaking and eventually hold Louis.

As I was eating and recovering, two doctors approached myself and Louis and introduced themselves, they then proceeded to say “we suspect that your baby has down’s syndrome”, bluntly delivered, just totally out of the blue!  It was brutal, a robotic and uncompassionate delivery of such news, with no consideration to how the diagnosis might effect me or to check if I had even 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 and not the diagnosis, I think my journey would have been so much easier and the acceptance of the diagnosis so much easier.  I felt that the doctors had stolen what was supposed to 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 that they were talking to somebody else, I felt totally disconnected to Louis at that point and could not comprehend what was happening.  The shock was absolutely immense.  It was the most surreal feeling: Here I was, after a horrendous pregnancy, an emergency cesarian section, just wanting to hold my baby only to be told of a diagnosis before I had even looked at him properly or even held him.  Something broke inside of me and I felt totally numb.  I remember being wheeled to a private room and seeing the lights overhead flashing by.  Tears were just falling from my eyes and I felt total despair, fear and anxiety, I just kept thinking that it was a dream and I would wake up soon.

From then on it was just a constant stream of doctors & nurses and tests being done on Louis, he had jaundice and was put in a special incubator.  They had to take his blood to check for a definite diagnosis, but I was told that he had the markers for down’s syndrome such as low muscle tone, a large gap in between his big toe and index toe and his eyes were slightly slanted.

I obviously got to hold Louis when I had recovered from the drugs, but all I could see was the diagnosis! I didn’t see the child that I had grown in me and was so desperate to meet.  I went from crying and feeling incredible fear to feeling positive and protective then the overwhelming fear would grip me again.

That first week in hospital was the most isolating and mentally crippling  experience of my life. I found the nights horrendous, I couldn’t sleep and was prescribed sleeping tablets which didn’t work, I would wake up in the night thinking it was all a dream and then realise it wasn’t. I had constant flash backs seeing the flashing lights overhead and hearing the doctor’s diagnosis, I felt like I was going mad. I experienced continual rollercoasters of emotion, 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, nobody could understand what I was feeling, I just remember howling and feeling the never ending tears that would just roll down my face.

Louis and I were discharged from hospital around day 7 from his birth, it was a daunting thought going home considering how I felt mentally and not knowing how I would cope.  I was so desperate to see my elder son and feel an element of normality at home, but that took a long time unfortunately, which leads me on to the early days….