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.

 

XOXOXO

24 Comments

  1. Jenny 26th January 2016 / 11:32

    Oh my goodness I just cried reading this. What a tough challenge and time for you and I am so glad there was a positive and happy outcome but I can imagine (relate to) what happened will stay with you for life. I have been there in other ways with my son almost dying at 11months and it has changed me for life even though he is happy and healthy now. Thanks for linking up to Share With Me #sharewithme

    • Collette 26th January 2016 / 14:38

      Oh thank you lovely. Having a child who is ill no matter how serious is just the worst thing in the world. You feel so helpless and you mum superpower disappears. Thank you for taking the time out to read xxx

  2. Fiona JK42 26th January 2016 / 19:55

    I saw this post in a blog linky and had to read it, for reasons given below. Firstly let me say that I am glad to read that your baby recovered.
    Having a seriously sick baby is far worse than being seriously ill oneself. You were wise to trust your instincts. Medical staff only see your child for a brief visit and so it is very important to insist on another opinion if you are sure the child is ill.
    Our family’s experience was similar. When our son K was around 20 months old, my husband and I noticed he seemed to be developing a squint. We took him to the doctor who said it would probably correct itself and not to worry. Over the next couple of weeks the squint got worse, and we also noticed that in the evening with artificial light the eye with the squint looked odd, but seemed to look OK the next morning in daylight. Another visit to the doctor, again told there was nothing to worry about. K was not in any discomfort, but we were getting more and more worried. Over the weekend we decided that we would both miss work on Monday and drive K to a specialist eye hospital in the nearest large town. We waited in A&E for hours as the doctors worked their way through people with obvious eye injuries. When it was our turn, the eye doctor took one look and then told us that K had a cancer called retinoblastoma, and needed to have his eye enucleated (removed) immediately, before the cancer spread to his brain. K had surgery and lots of tests that had to be repeated every few months for the next few years, but eventually we were told that K no longer had a significant chance of the cancer recurring or developing in his remaining eye, and we were able to finally put it behind us. K is now 28 years old, and although he has had to wear a prosthetic eye most of his life he is much like any other young man, plays sports, drives a car and is not at all handicapped by having only 1 eye.
    I’m so glad for you and your son that you kept telling the medical staff of your worries until they took action. Because of my experience I always say to people who think their child is sick that they should keep insisting on being seen by a specialist or someone more experienced. There are only a handful of retinoblastoma cases per year, so it’s not surprising the first doctor who saw K was not familiar with it. The illness your son had is also not something that occurs frequently, and junior staff may never have seen a live case. As mothers we definitely need to trust our instincts and not get fobbed off when medics try to make us feel we are making a fuss over nothing. It is definitely a case of “better safe than sorry”.

    • Collette 27th January 2016 / 16:00

      Wow! you’ve been through quite the ordeal in your time too! Bless you. I’m so glad your son has lead a happy and healthy life! Your right, mothers instinct definitely worth taking note of. Thankyou so much for taking time to read and comment xx

  3. Louise (Little Hearts, Big Love) 28th January 2016 / 16:31

    What a scary and frightening experience for you all. Seeing your baby critically ill in intensive care and not knowing if they will survive is one of the most frightening things that any parent can go through. I have been there myself and reading your post brought a lot of those memories back. I am so glad that D is now doing so well and has recovered so well x

    • Collette 29th January 2016 / 11:25

      Thank you. I am shocked at how many people actually do go through this kind of experience. It only comes to light when you have the courage to talk about it. It brings a strange sense of comfort knowing that you are not alone in what you went through. Even though the thought of someone else going through it is horrendous too. I hope that makes sense? Thank you for reading xx

  4. alongcamebuddy 28th January 2016 / 19:24

    So glad he has made a recovery. Parenting is so tough let alone when they are poorly. What a difficult blog post to write!! Thanks for sharing x

    • Collette 29th January 2016 / 11:25

      Thank you so much. He’s a little fighter and my ultimate hero. Thank you for reading xx

  5. Unhinged Mummy (aka Janine Woods) 28th January 2016 / 19:59

    There’s nothing as strong as a mother’s instinct is there? I know this very well myself. I’m glad you’re little one is now fine. It must have been the most awful time of your life but it sounds like he’s a little fighter and was in great hands 🙂

    Visiting from #coolmumclub

  6. MMT 28th January 2016 / 21:39

    My goodness, I am so sorry you had to go through such an awful experience, but what a miracle he fought through. This is a remarkable tale of modern medicine, and a babys determination to live. Love him! Thank you for sharing – this puts alot into perspective. #coolmumclub

    • Collette 29th January 2016 / 11:22

      What a beautiful comment. Thank you so much that means a lot xx

  7. Min 28th January 2016 / 22:55

    How terrifying that this could happen because of the cold sore virus. I remember reading about it at the time when my little one was a newborn. They’re so vulnerable at that age. Thank goodness he pulled through. #CoolMumClub

    • Collette 29th January 2016 / 11:21

      Thank you. It was the worst experience of my life, and so unfortunate as like I say, none of us have ever had a cold sore so I have no idea where it came from which is even more scary! I’m hoping I raised a little bit of awareness. Thank you for reading xxx

  8. MMT 19th March 2016 / 11:12

    Hi, loved this post the first time (although it broke my heart!). Thanks for linking it up to #coolmumclub xx

  9. Gemma 7th February 2017 / 06:56

    I can’t imagine how terrifying this must have been for you and your family and I am so happy that your little fighter is doing well. I live in fear of something being wrong with my little girl and more so that I might miss the signs. Thank you for sharing what must have been a horrendous time for you. Xx
    #postsfromtheheart

    • Collette 7th February 2017 / 14:09

      Thank you so much. Yes it was an horrific time but something you just deal with, if that makes sense? It’s only afterwards when I reflect on it does it make me realise how awful it was. It’s also a fear that never goes away. I’m forever fretting that Dylan will catch a bug that will make him go into liver failure again but I try remind myself not to think so negatively. It’s awful for any parent to go through but trust me, if there’s anything wrong with your child YOU will definitely spot it. The health professionals may not, but your instinct will. Thanks for reading xx

  10. Savings 4 Savvy Musm 7th February 2017 / 21:01

    What a cutie!! So sorry you had to go through this. I can’t imagine how stressful and scary this was for you all!! #PostsFromTheHeart

  11. Gary 7th February 2017 / 22:26

    Can relate a lot to this post. I’ve done a similar one on my daughter’s seizures – one of which left her in intensive care. It’s a truly terrifying experience seeing your child so critically ill. Glad your boy is doing well now #postsfromtheheart

  12. Mrs Mummy Harris 11th February 2017 / 18:54

    I am so glad little man has recovered and so quickly! someone was definately looking down on you all!! I completely understand how you felt – Ben was rushing to NICU as he wasnt able to breath unaided so the first week of his life we were seperated and the wires and incubators do not help the emotions although you know they’re doing the best for your child. You do question why them, why you and why couldnt you take their place?
    Im so happy you got the Christmas you had dreamed of rather than still being in hospital. Thank god for the charities and the NHS! #PostsFromTheHeart

    • Collette 12th February 2017 / 13:10

      Thankyou! I’m so sorry to hear about your Ben too. It’s an horrendous time. We wouldn’t be anywhere without the skilled Dr’s and nurses on those wards. Thank the lord for the NHS! xx

  13. Becci - The UnNaturalMother 12th February 2017 / 21:20

    WOW , that was hard to read and look at your pictures. I too was a parent of a critically ill child , she is now a bouncing 16 mth old now but for a while it was touch and go and my world fell apart. I have mentioned bit’s about it in my blog but cant write a full post about it as it’s still too raw. My husband took photo’s too but i cant bring myself to look at them.Thank you for sharing. It’s healing to read this post.Thank you for joining us on #postsfromtheheart

    • Collette 13th February 2017 / 14:39

      Oh Darling, it does get easier I promise. I’m so glad I could offer just a small bit of comfort. Every one deals with things completely differently so don’t worry that you aren’t ready to share your story just yet. You will know when it feels right. If you ever want to chat you know where I am xxx

  14. Anne 13th February 2017 / 10:43

    What a scary time for you all, I’m so glad D pulled through, he’s a tough cookie for sure. xx
    #PostsFromTheHeart

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