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My Neuro Hero

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The Big Day9th Jun 2023
The big day is here.

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My pregnancy with Oliver was pretty non eventful, Oliver was fine, I on the other hand struggled with sickness and SPD (which makes your pelvic joints stiff or loose and makes mobility interesting!)! But he was fine! Bloods and tests always came back great, scans were perfect; everything was normal and healthy. There were never any concerns, he was growing at the textbook rate, and I didn’t know it at the time but they even measure the cerebellum (the part of the brain that is affected in Oliver) during pregnancy on the scans and again this was normal.

A few weeks before my due date, my bump grew a couple of centimetres more than the range it should be in, which wasn’t a concern at first but after a couple of weeks of it happening I had a couple more scans as they were concerned I was having a ginormous baby! Thankfully that wasn’t the case, in fact I had excess amniotic fluid. Due to this they kept an extra eye on me and told me to come to hospital the minute I started having contractions or if my waters broke.

The day after Oliver’s due date, after a particularly restless night my waters spontaneously broke in the early hours and off we popped to hospital, I have never been more excited!! They monitored Oliver, they couldn’t find his accelerations for a while but then they could see I was having contractions (I couldn’t feel a thing – I remember thinking to myself ‘well if this is what the early start of labour is like, this should be a breeze’)! Ha how little did I know!

We were sent home around lunchtime and I was booked in to be induced in 24 hours if I hadn’t gone into labour naturally (due to the risk of infection with my waters broken). Thankfully at home the contractions continued and I laboured at home using my breathing techniques I had learnt from an amazing birthing class called Daisy Foundation! I kept going until midnight where the contractions were three minutes apart and thought it was best to be in hospital. The car journey was one I will never forget, I remember asking Steve to stop the car five metres from the hospital so I could have a contraction!

Labour makes you do and say funny things, apparently I was very polite to everyone, saying my please and thank you’s when asking for water in between pushing (I surprised myself!). The hospital staff also laughed at me when they asked what pain relief I had taken at home. I had taken one paracetamol for a headache, the logic was I could save the other one if I needed it, for the headache, not for the labour pains! They all thought I was nuts!

After two more hours of labour and progressing to the pushing stage, I pushed for three hours and it became obvious as time went on that Oliver wasn’t coming. We tried everything and then suddenly lots of people entered the room introducing themselves and telling me we were going to theatre to get him out. I was petrified and excited at the same time, worried why he wasn’t coming but couldn’t wait to meet him. After 25 hours of labour on just one paracetamol (!) and gas and air at the end, it became serious as my contractions were dwindling and there was no progress. They gave me a spinal block meaning I literally felt nothing from my chest down, and attempted to turn Oliver. This didn’t work so they then attempted several procedures to get him out. What we didn’t know at this point, and what we didn’t know for several months was how stuck he was. He had suffered from something called Shoulder Dystocia, which is a life threatening situation.

Eventually, after getting me to push with the contractions (which I couldn’t actually feel due to the spinal block!) with this huge man pushing on my stomach, and doing different manoeuvres they finally got him out. He wasn’t breathing and had to be resuscitated and had a tube put down his nose to clear everything (apparently he had a poo coming out which we now know means he was in distress). I remember them saying ‘are you ready to meet your baby?’ – I hadn’t cried, got upset or emotional throughout until this moment and I began to cry. My gorgeous baby boy was placed on me and he stopped crying!!

I only had a short time with him before he was whisked off to NICU. They x-rayed him for a broken shoulder (thankfully he was fine) and the surgeon briefly told me Oliver had gotten stuck but given that, we were both physically fine. So we thought no more of it.

For the first day Oliver fed really well and we had lots of lovely cuddles with him. From day two onwards his feeding began to spiral, he would get really upset feeding and scream for ages afterwards. His body tone was also noticed as being very different to other new-borns, but it wasn’t recognised as anything serious so again we thought nothing of it. Shortly after this he developed a temperature and was breathing funny and after testing his blood sugars they discovered he had hypoglaecimia. We then had to top up his feeding with formula milk because he wasn’t getting enough milk. It was odd at the time because there was no issue with my production of milk and he wanted it so badly so we couldn’t fathom why he wasn’t getting enough.

We now know these were classic neurological signs present right from birth; arching of the back (meaning he was in pain), abnormal tone, hypoglycemia, feeding issues, etc. Breast feeding is much harder for a baby than bottle feeding as they have to work their mouths a lot harder. Neurological problems can also affect swallowing and muscle tone in the mouth, making feeding much more difficult. Looking back that is what happened to Oliver, we just didn’t know it at the time.

I beat myself up about this all of the time, if only I had known these were classic signs he had something neurological going on, if only we had known more at the time to push to investigate it. We were just so swept up in love with our baby, we were new parents, not experts and there was nothing alarming to make us think something was hugely wrong, we just thought he was a bit traumatised from his birth and was a fussy baby!

What we did not know at that point, what we didn’t know for many months, was how long Oliver was stuck for. Eventually we found out he was stuck for 7-8 minutes during birth. Most children don’t survive after being stuck for ten minutes. We only became aware of the word shoulder dystocia several months later, we had no idea it was a life threatening situation. It was at that point I became very upset as it dawned on us that if he had been stuck for much longer we could have lost him.

As time went on, we started to wonder if something was going on with Oliver as these symptoms became more evident. We wondered if he had been oxygen deprived during the time he was stuck. We still have no answers on this to this day.

We kept mentioning our concerns, the fact he wasn’t rolling, that he wasn’t able to use his hands like other babies do. I remember being at Baby Sensory with Oliver when he was six months old, the mums had to lie the babies on their front to do tummy time. All the other babies were lifting their heads up where as Oliver just continued to lie his on the floor. At the time I was assured he was just behind a little because babies all develop at different rates. It breaks my heart to remember this time, not knowing what we do now, that he has a serious neurological condition.

Sometimes I wish to go back to those times of blissful unawareness of what faces us every day. The innocent precious first few months when we knew no different. When he was like any other baby who didn’t walk or sit or crawl. When all your hopes and dreams for your child seem so vivid. These times are bittersweet for me, lovely and heart-warming, but tinged with now knowing what we didn’t then. And thus started our roller-coaster journey Xx

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