Being the parents of a critically ill child

I was in two minds whether or not to publish a post like this as it is still a very raw subject. I’ve edited it so many times and hovered over the “publish” button with doubt. But with the aim of this blog being a memory, this is still apart of our journey as a family. It was a time in our life where we were the most vunerable, where we saw each other at our weakest and a time where we needed each other the most. That’s because we experienced something no parent ever wants to go through.

We had the awful experience of nearly loosing our child.

I have skipped a lot out from this experience due to the length of the post but the memories (however bad they were) are still stay with me.

D is now 17 weeks old, and a happy thriving 17 week old boy he is. He’s such a little charmer and a complete picture of health. But this wasn’t always the case. D came into the world a healthy (albeit in a slightly dramatic way – that will be for another post) little boy all 7lb 9oz of him. We were absolutely over the moon with him and K relished being a big sister. We brought him home and the first 3-4days were a haze of newborn craziness. On day 5 of his little life, looking back (it wasn’t particularly obvious at the time) he was very sleepy (I say this wasn’t obvious because most newborns spend their days sleeping) he never cried (really- he didn’t) and never really wanted food. I was desperately trying to breastfeed at the time and D really struggled to latch on. No amount of persuasion would get him to latch and for fear of him refusing the breast completely we opted to feed him via a cup until he was established. It would take him around 30-40mins to feed 3oz of breast milk from a cup which we thought at the time was odd but put it down to him being a bit lazy. When we spoke to health professionals about all his little “quirks” especially him not crying or waking they just reassured me that he was just a “content baby”. This went on for a few days and my mothering instinct alarm bells were starting to ring. So when we went to the midwife for our 10day check up we insisted that D was checked over. As it was, the midwife agreed that something wasn’t right especially as he had lost weight since day 5 and sent us to the local children’s hospital for D to be looked at. First impressions from all the staff was that D had not been eating much therefore his blood sugar levels were low resulting in him being lethargic. Not an ideal diagnosis but one that was relevantly easy to treat. We were instantly admitted with a view for D to have some fluids then to be discharged home. The next 48hrs were filled with D having blood test after blood test to determine why he was so lethargic as they believed that his low blood sugar wasn’t only to blame. For the sake of this post (and the fact that I don’t want it to be 10 pages long) I will skip a lot of the medical tests they were doing.

On the 4th night of our hospital stay around 1am, Dylan became even more unwell than he already was and the Drs took him away to be examined. After what felt like a lifetime, a doctor came in to my room and devastatingly told me that some of D’s blood results had come back earlier that evening and it had showed that he had liver failure caused by an unknown infection.

Coming from a nursing background, I understood that this was extremely serious. The first thing I could think to do was ask the doctor if my baby was going to die. The honest answer? It was that she really didn’t know.

I was heartbroken. I was hysterical. I couldn’t think straight. I felt angry. Angry that this was happening to us. Angry that my poor defenceless 2 week old baby was suffering like this. Angry that it wasn’t me going through it instead.

We were immediately transferred to a hospital that had a liver speciality but this was in Leeds almost 50 miles from where we lived. Thankfully there is a charity called The Sick Childrens Trust which provided us with accommodation for the time we were there rather than trailing back and forth to Leeds from Sheffield. We will be forever grateful that there are charities out there that provide such service. I don’t know how we would have coped without that support.

D was instantly brought to the High Dependency Ward where the consultants made the decision to transfer him to the Intensive Care Ward and put him on a life support machine to help D concentrate on fighting the infection rather than concentrating on breathing. No parent should ever have to witness their baby hooked up to so many wires and machines. We spent our days there continuously watching the monitors, making sure his vital stats were stable and that he was stable in himself. I cried every single day. I cried because my baby was ill, I cried because I was away from my  daughter who is only 2 years old and although she was safe with grandparents and visited us most days I desperately wanted to be at home with her doing the normal mum stuff, I cried because I felt guilty that I couldn’t be with them both at the same time when they both needed me. I cried because I felt cheated of those precious new born days where all you do is sit and snuggle and bond and I cried the hardest because with everything that was going on I couldn’t make it better. I couldn’t make my son better. We were sat down over the weekend that D arrived in Leeds and were told that the next 24-48hrs were critical and to brace ourselves for the worst.

On life support in intensive care.

On life support in intensive care.

I genuinely thought my life was over.

After a lot of investigation, It turned out that D had caught the Type 1 Herpes Virus which generally comes from a cold sore. The most frustrating part of this whole scenario is that myself nor my husband have ever had a cold sore. Nor did any of our visitors. How unlucky is that!?

His big sister visited him nearly everyday

His big sister visited him nearly everyday

Thankfully after a couple of days on intensive care, D was taken off  the life support machine and transferred to a ward and (after  jumpy start where he was transferred back to HDU for a few days) gradually made a full recovery. It took 3.5 weeks in hospital, which is no time at all given the seriousness of his condition. We were (and are) so lucky. We are so grateful that he’s here to tell the tale. We are blessed that he made a speedy recovery as we were told on many occasions by many doctors that we might still be in hospital at Christmas. How did he make such a quick recovery? I have no idea. He is a fighter. He is my fighter. He was determined that he was going to be apart of our family. Someone up there was looking down on us and helped us win our miracle.

We will be forever in the doctors debt, they were truly fantastic, knowledgeable and skilled human beings. Thanks to them I have my life, my soul and my family of 4.

All smiles. The day before we were discharged from hospital at 5 weeks old.

All smiles. The day before we were discharged from hospital at 5 weeks old.