How it all began

Im a mum to two sunshiney boys who have both, in their own way had to fight to be here. One continues that fight on a daily basis – Alfie, born at 23 weeks who is now 5 and the other – Rohan, born at 30 weeks, now 16 months luckily doesn’t face the same kind of struggles as his brother.

Alfie at the monkey sanctuary in Looe at half term.

Rohan trying out as a fireman at playgroup.

Both my labours were spontanious and a complete mystery as to why they were so early. Apparently nothing physically wrong with my body but it just doesn’t agree with the designated cooking time.  Alfie was born on the back seat of a paramedic car in the hospital car park where we were on holiday (in Bath). My waters broke in the street and as we arrived at the entrance of the hospital Tom my partner went to find a midwife and the paramedic went to find a wheelchair and I gave birth to Alfie alone on the back seat at 7.30pm on a cold winters night with the car door wide open. He was given under 5% chance of survival, we spent nearly a year in hospital, he’s had dozens of major operations on his eyes, head, trachea. we nearly lost him on several occasions, we witnessed him being given CPR on the ward, we had lots of phone calls in the middle of the night to get to the ward ASAP, amazing doctors came to his rescue including one that gave him rescue breaths via a bag and mask all the way to Bristol from Exeter in the Ambulance. I witnessed several of Alfie’s room mates pass away around me, sometimes with just a curtain between us. I met doctors and nurses I loved and ones that I didnt trust and felt scared to leave him with them at night. I lived in the hospital or in the accommodation next door. I put on weight as the only thing to break up the day was a visit to the vending machine. We were continually visited by our wonderful friends and family and we made special bonds with new friends going through the same as us.  He has one leg growing very differently to the other due to the Sepsis he contracted on the ward and he has had a tracheostomy in place for nearly 4 years now. We have carers in our house every night watching him and he can only be left with a trachy trained person so thats me or Tom or a nurse. Alfie is possibly Autistic but we are just at the start of a very long journey to get him assessed for that. He is under the care of great Ormond Street as they previously did major skull reconstruction on him and we about to undergo a tracheal resection this Spring which is a rare and very major form of surgery where they remove a section of the airway and connect it back together. Alfie attends a glorious special needs school where we live in Devon and we are supported by a huge pool of healthcare professionals – thank God or who ever for the NHS!

Rohan was a very different story, we made it to our local hospital but he was given rescue breaths as soon as he was born and taken straight to NICU where he stayed on breathing support for several days. He was on the ward for a total of 6 weeks and we took him home on the 6th Dec in time for our first Christmas as a family of four. I expressed milk religiously for both boys, unfortunately Alfie wasn’t strong enough to breastfeed and my milk supply was shocking but I made it work part bottle part boob with Rohan for just over a year. Rohan does not have any lasting prognosis from his prematurity apart from that he is generally delayed and is having trouble moving around. Corrected, he is 14 months but still can’t crawl or walk or do transitional movements i.e lying to sitting or sitting to standing. He is desperately frustrated with this so we are currently under Physio and seeing his lovely consultant who also treated his brother.

There are lots of stories I have been meaning to write down from my experiences being their mum over the last 5 years and I hope to capture some of those here as well as updating on daily life with the boys.