Guest blog from Ethan Ryan

Today’s post is a guest blog from Ethan Ryan whose son, Oliver, was born extremely prematurely during covid lockdown. Oliver very sadly passed away a few months after he was born and in this blog Ethan talks about how he helped his daughter, Rose, through her grieving process. It’s a topic that touches me deeply because I rehearsed many of the same kinds of conversations in my head when my youngest was in NICU fighting for her life and my eldest daughter was only 4. Read more about Ethan’s story on his blog or take a look at his podcast.

This is a small blog talking about how Rose, my daughter, dealt with the premature birth of her brother. First of all it’s nice to be able to join up and collaborate with other parents and talk about these issues, but also to be able to share experiences with you.

Rose was only 4 years old at the start of her brother’s pregnancy, and covid wasn’t even in the news. I remember first telling Rose that she was going to be a big sister fairly early on, I believe we were only 8 to 9 weeks into the pregnancy. Like any other child she kind of took this information and just went with it. And by ‘went with it’, it was short lived, meaning for a split second she was interested, then she went off to play with her toys.

Due to me having near on split custody of my daughter, it was a big fear of mine that somewhere along our pregnancy journey that she may start to feel left out. With this in mind I kept Rose up to date on the scans ect, and talked about the pregnancy with her. I didnt want to overwhelm her but I wanted her to know she was going to be a big sister. I believe it finally sank in when we went for a private scan, Rose came along with us as only right, and as she gazed up at the monitor, I could see her face light up. “It’s a boy”, the lady said. I said to Rose, you’re going to be a big sister, you’re going to have a baby brother. Rose was so happy with this, not that she had a preference, she was just happy to be a big sister.

But soon after this is when the complications started, to cut long story short, Oliver arrived at 23wks on the dot with covid in full swing and lockdown 1 happening. What did this mean for Rose? Well the only time Rose ever got to see her baby brother, except from photos and videos from either me or my partner, was 2 days before he was scheduled to pass. Let me explain.

Oliver wasn’t well and our only realistic choice was palliative care, this meant at some point we would need to remove the breathing tube, and this was scheduled on a certain day. (Read more about this on my blog)

Moving back to Rose. Rose first knew that her brother wasn’t well when I had to sit her down and tell her, her brother might go to heaven. Trying to explain this to a 4 year old was very challenging, and many times I googled how to do it and looked for pointers in the right direction, but I was just truthful to a degree and explained he wasn’t very well. She took this news calmly and asked why he wasn’t well and then I had to explain, Oliver was born very early.

I think over the next few weeks and months Rose grew confused, I mean she wasn’t allowed in the hospitals (Oliver travelled to 3 different hospitals) and I was gone a lot of the time, and I even had to cancel set days I had with Rose just to be able to see her brother. Me and Rose have always had a very close bond and to see her confused as to why I wasn’t there was hard, but to see her confused as to why she couldn’t go and be a big sister was heart breaking. She would often ask questions, asking if he was going to heaven yet or is he going to come home. Heart-breaking I just couldn’t answer her questions.

Myself and her mother spoke to her and we even spoke to her teachers at nursery/school just to see if they picked up on any behaviour changes, luckily non were picked up. It was only when she saw him for the first time she opened up. A month before her 5th birthday is when she finally got to see Oliver at St Thomas’s hospital London. Due to the palliative care decision we were given a side room for relatives to come in over the weekend to see Oliver, and on the Sunday my family came, first time any other person had seen Oliver except from myself and partner, but that’s probably for another blog.

As Rose walked in with my brother as he had picked her up, I felt myself panic: what if she cries because she sees the wires and the tubes, what if the sounds of the nicu scare her. Surprisingly enough she just walked straight in and looked about and then began to tell about her trip to Chessington and showed the butterfly tattoo on her arm.
After this that’s when she acknowledged the wires and tubes etc. She asked what they were for and why they were there. I tried my best to answer honestly and she now knows what they did.

The best moment for me was when I asked Rose if she wanted to hold him and she said yes without hesitation. She was so gentle and she didn’t want to move any wires, she hovered her hand above his belly and she gave him a slight bop on the nose. The bond was made instantly, in those split moments she was the big sister she wanted to be. (Proud moment for me there).

After Oliver had sadly passed was the hardest part, mainly because I wasn’t aware of how I even felt never mind telling a proud big sister her little brother had gone to heaven. Sitting down with Rose I explained that Oliver had gone to heaven as he has a very important job, I explained he has had to go and look after all the other babies with great nanny. She was very upset by this and still is, but the hardest part for me is when she would randomly ask, is Oliver coming back. After a lot of back and forth it was agreed by myself and her mother to sit her down and be honest, we told Rose that Oliver had died and he wouldn’t be coming back. As hard as that was she understood it.

Still from time to time she will get upset and want to talk about him and I welcome this as I love talking about him. Her school are fully aware and they even have a memory book and when Rose feels like she wants to talk about him they go off and sit on the sofa and talk about him, even draw pictures and put them in her little book.

Do I find it easier knowing that she couldn’t see him, knowing she didn’t have that strong bond from the beginning to break? I’d say yes, but do I wish she could have been there from the beginning? Also yes. I guess there isn’t really a right or wrong in this as either option would have had natural consequences. Rose also didn’t attend the funeral, that was my choice and a choice I thought would protect her. I do believe this was the right choice and I stick by it.

For the whole part Rose has been my little rock so to speak and I have found her to be so resilient. The strain she must have gone through with knowing about Oliver and then finally seeing him, to not ever seeing him again is somewhat unimaginable. And the choice at one point was to not let her come to the hospital at all, just to save her from any of it, but at the end of the day we have photos we can look back on and she is so proud of them and often talks about them.