MILO TOBIAS WILLIAM
Born February 6th 2012 at 37+1 gestation, weighing 5lb 9oz.
Died July 3rd 2012 at 21+1 weeks of age weighing 10lb 2oz.
My son had many issues. So many more than he deserved. His main issue was his brain damage that was caused by his lack of breathing at birth. His development was severed delayed because of this. At his death his development was the same as a 2 month old baby. He could smile and wiggle a little bit but that was about it. He couldn’t hold his own head up or roll over. He had very little control of his limbs. This damage also caused an illness called bulbar palsy which means he didn’t have a suck/swallow/gag reflex. He had to be tube fed because of this. He also suffered from major reflux which caused his milk to go up and into his lungs and so he had many, many chest infections. Once this was discovered the tube was put into his intestine instead of his stomach and so he had fewer chest infections. Later we discovered his brain damage had also caused him to have epilepsy
My beautiful boy fought every moment of his life and while he was still inside me. He fought through his meconium aspiration to come into this world. That almost killed him before he got to take his first breath. He needed a lot of assistance straight after his birth and for that I thank the doctors and nurses that helped him. Without them he wouldn’t have survives long enough for me to see and hold him.
He spent every waking (and sleeping for that matter) moment in a hospital ward. He was never well enough to come home and spend time under the same roof as his brother or dad. I spent as much time at the hospital as I could. I never wanted to leave his side.
He was initially in my local hospital’s neonatal unit but sadly the unit were unable to care for him so he was moved to the nearest large hospital. They took fantastic care of him and they kept him breathing. I couldn’t visit him as much as I wanted when he was there as I was needed to look after my eldest. Not spending that time with him is one of my biggest regrets. He coped so well with all the manner of tests he was subjected too. It was an awful time. Every phone call or visit told of us of another test they had done/planned to do to try to figure out all his issues and how to help him as well as they could.
One of his tests required him to be put under and he absolutely hated that. He reacted to the anaesthetic and so needed to be moved to a side room with the highest level of care. I really thought we were going to lose him then but he rallied and then did so well he was able to come back to my local hospital to put on weight ready for an operation.
When Milo was 10 weeks old his feeding tube moved causing a fluid build up in his lungs and he ended up back in the intensive care unit on a ventilator. Seeing my baby laying absolutely still with a giant tube in his mouth was horrendous.
It was at this point that we were told that Milo was ‘incompatible with life’. Such a great term to be used. Hearing the doctors say they couldn’t fix my son was like them ripping my heart out and running it over with a 100 tonne lorry 100 times. All I wanted was to take him home and they basically were telling me the only way he way he was leaving was in a coffin.
My Milo continued to fight for another 10 weeks after we were told we were going to lose him. He was giving me hope that we might get to be a family at home. The last weekend we had together was fantastic. He sat up and held a book. He smiled at me. He coped with having me doing his physio and subsequent bath. When we left that Sunday night he was well and good.
Getting the phone call on the Tuesday morning from his consultant, saying we needed to get to the hospital ASAP was so scary. The drive that on a good day took an hour took nearly 2 due to the rush hour. I just wanted to ram all the cars out-of-the-way and get to my boy. He was so pale when we finally got to him and if he hadn’t had an oxygen mask I would have sworn he was already gone. We spent the day with just him and his nurse. I held him constantly and told him I loved him over and over. I even napped with him which I what I wanted to do from the moment he was born.
The grandparents came for a visit to say goodbye. Milo was getting weaker and weaker. I told the grandparents that they had to leave ( I wanted to be alone with my son when he passed). I escorted them out at 21:30 and Milo passed away at 21:38. He was in my arms with his dad’s arms around me. As he went I told him that it was OK to go and that he didn’t need to fight any more.
Making the phone calls to say he was gone was awful. Luckily I have very little memory of them due to the shock. Two of the nurses came up to visit him once he had passed. One was extremely upset and I had to comfort her more than she comforted me. While some may think that was unprofessional, it just showed me how much she loved my boy and how much she was going to miss him.
My Milo’s funeral was held 3 weeks after his death. We had a small battle with the vicar of where we wanted my Milo buried as we live out of parish but I couldn’t see my son buried anywhere else. Luckily the vicar relented and Milo is with my family and shares my paternal grandparents grave. We chose “baby mine” from Dumbo and “There you’ll be” by Faith Hill as the songs for his service. Two of the nurses came to the funeral and I had been in control of my emotions until I saw them. I was so overwhelmed that they came to say goodbye.
I miss my son every day. I wonder who he would have become and how life would have been with him home. If wishes, hope and love could have saved him then he would have lived forever.