This post was written by Natalie, a friend of mine who lost her son Otis at 35 weeks. Natalie is determined that Otis’ death will help other people who find themselves in this awful situation. Natalie has set up a Facebook page titled ‘After Otis – Our Journey’ and she has also set up the voluntary service ‘Letters from Heaven’ offering children the chance to receive a letter from their angel sibling or parent in the hope that they will find some comfort knowing that the angel is happy. Links to both of these can be found at the bottom of this post. This is Otis’ Story written by Natalie:
I was admitted to hospital April 12th 2016 at 27 weeks due to PV bleeds and suspected pre term labour; I stayed in hospital for 4 weeks during which time continuous attempts were made to stop my constant contracting (every 3-5 minutes for over 3 weeks). After 4 weeks I was released from hospital, and I was now 31 weeks gestation and a growth scan was booked for the following week. Chris and I went for our scan at 32 weeks (this was on a Monday). It was then that they found the Otis had a ‘uniform mass’ on his brain which was around 3cm in size. We were told to go back three days later (on the Thursday) for a second opinion on what the mass could possibly be. When we returned, the mass had grown a significant amount to cover almost half of his brain (the left hand side – which is the most dominant side) and the consultant in charge that day insisted we go to a more specialist hospital the following Monday to see a neurologist.
We travelled just over two hours on the Monday to have an ultrasound with specialist doctors. It was that day we were told we needed an urgent MRI on Otis’ brain which was booked for the following day. On the Tuesday we had the MRI scan and were sent home. I got a call Wednesday morning, asking for us to go back to the hospital that day; this is when I started to panic, thinking that this tumour was something more. We arrived at the hospital to be greeted with a counsellor, neurologist and a midwife. It was this day we were told we were going to lose our sweet boy. Otis had a significant sized tumour and also multiple brain haemorrhages, so severe that they had shifted the midline of his brain over to the right hand side – resulting in permanent brain damage, eventually leading to him becoming brain dead then ultimately, death.
My heart dropped. It didn’t feel real. I was 34 weeks pregnant and was just learning my son would never grow up. We returned home. Otis gave us an extra nearly 7 days of love before the brain tumour engulfed his whole brain, making him completely brain dead, and he passed away. We delivered Otis after a strangely peaceful birth at 04:19am just as the sun was rising on the 3rd of June 2016. He weighed and will forever weigh 5lbs1oz.
We found out through tests done on me and his daddy that he had a condition called Neonatal Autoimmune Thrombocytopenia which is what caused the haemorrhages (but not the tumour) and at the state the NAIT was at the time, the consequences of that in itself were dire – most probably death. Had they caught the NAIT early in pregnancy then they MAY have had a small chance of treating him, but it was unlikely. It seems from the beginning we were only destined to have Otis here with us while he was growing inside me, while he was warm and safe and loved, while all he knew was the sound of his mummy’s heartbeat and his sisters singing … The results from all the tests provide some reassurance because we know now there is absolutely nothing we could have done, but it doesn’t soften the blow that we were only honoured to spend time with our sweet boy while I was pregnant and the couple of days after. We miss him, we love him, we will do both eternally.
After Otis – Our Journey – https://www.facebook.com/Afterotis/
Letters from Heaven – https://www.facebook.com/Letters-from-Heaven-1743751045896522/