When Samuel was in NICU we would regularly have a nurse called K. I really liked her, she had a great sense of humour (which really helped given the situation) and she was very kind and seemed to be very fond of Sam.
I think we’d been in NICU two or three weeks when the head consultant Dr MK asked us to have a chat with him. He told us that they were becoming increasingly concerned about Samuel’s condition and the fact they were finding his seizures so hard to control. At that point he was on a Midazolam infusion and totally out of it. Dr MK told us that we needed to prepare ourselves for the possibility that Samuel would not come home. Ever. We would either lose him to the seizures or that they would be so impossible to treat he would have to be permanently sedated and remain in hospital indefinitely. As you can imagine our already shaky world crumbled.
My husband got angry. Not at the doctor but at the unfairness of it all. At the women, pregnant women he saw outside the maternity unit in their dressing gowns smoking. We were both very emotional. We went back out to Samuel’s cot and K sat with us for quite a while before telling us her story.
She hesitated at first, I think she was unsure whether it was the right thing to do. But I’m so glad she did. She told us of her baby boy J, who had been born 24 years previously. He had a rare brain disorder, I can’t remember if she told me what it was or whether he had a diagnosis, but she said it was bad. His brain was in a worse situation than Sam’s. He also had a severe cleft palate and in effect was missing his top lip. She was allowed to take him home, but everyone knew it was for ‘family time’ before he passed away. It was almost certain that her boy wouldn’t make it. If I remember correctly, he lived for around 8 months.
As she told me this story I kept staring at her thinking, but how are you here, walking, talking, how have you made it through? But the point is, she did. Her experience led her into nursing, she was a hairdresser when she had J, but after what she went through she wanted to help other babies, so she became a neonatal nurse.
K told us that things we said in the meeting with the doctor, the things that my husband had got angry about, she had said the same things herself all those years ago. She told me that I must not feel guilty, however hard it is, I must not feel guilty. She said that I must always remember that I brought Samuel into this world and whatever happens I will give him a life full of love.
Throughout our time in NICU when things got really bad and I had really dark thoughts I kept reminding myself that K’s been through this and she survived. She somehow made it through and she had worse odds than we did.
The fact that she wanted to help other poorly babies made me admire her even more. I don’t think I’ve got it in me to do that. Being a NICU nurse you see just how damn cruel nature can be. Our friend Auntie C, also a NICU nurse, has told me many stories of children she’s nursed and the different conditions. I don’t think I could deal with that cruelty every day.
When we finally got Samuel home, my husband and I made a deal. That we would truly treasure Samuel. We would enjoy every moment and celebrate the boy he is and try not to mourn the boy he will never be. We made that pact in memory of J.
Although he has surprised the doctors that he’s still here and seems to be doing ok, we know that we will outlive Samuel. He wont make old bones. But we’ve got this far and he is a fighter.
I know there will be parents reading this that have lost their babies. Samuel is 16 months and maybe their little ones didn’t make it that far. But I promise each and every one of you that we hold and squeeze him so tightly every day and know how lucky we are to still have him here with us.
Whatever happens in the future, somehow we will survive. We have to, as Samuel will always be here in our hearts.