Blog Daisy Nelle

What do we do, Daisy?

I haven’t written in a while. Time slips away very quickly when your baby is in special care. But slowly at the same time.

I have found a small window of time this morning, and so I’m going to try and get things down. It helps me to get it all out, because I don’t have many opportunities to find someone to talk to face-to-face. And I find that hard and really isolating, because I’m surrounded by amazing people, but I can’t find a way to join them. I feel like that about many things in life at the moment.

I woke with Bill, to get him ready and give him his breakfast before his dad arrived to collect him. And I sat watching him eat his Cheerios and chatting to him. His big blue eyes and his bright smile. And that corn-yellow hair. He told me to: “get that cheeky little smile up, Mama.” A phrase he has taken to saying when he can tell I’m sad. I didn’t want him to go, but the fact of the matter is that he’ll have a lovely time. Everyone, it seems, can give my little boy more than I can right now, and if you have known me for any stretch of time you will know how much that is hurting me.

The past week has been extremely hard. And not just because of spending another week in hospital, which is difficult enough as it is. Daisy turned a month old yesterday. And it hit me like a slap in the face. Raw, shocking and stinging. Leaving it’s mark like a red welt on my heart. Last weekend, we were taking her out to see the ducks in the pond outside our local hospital. Her first time outside in an old hospital pram. And a small window of what might be to come when she’s home. And now we’re in a completely different place.

And I don’t mean a completely different place in our journey. I mean a completely different hospital. Daisy was transferred to St Mary’s Hospital in Manchester, for a routine check by their Ear, Nose & Throat Team (ENT). The ENT team were going to assess her airway, to see how easy it would be to intubate her in an emergency. We were told there was always a chance that words like “tracheostomy” would be brought up, but that Daisy was doing so well that it was highly doubted that there would be a problem.

She went down for the procedure on Wednesday. And we were told what was going to happen. And then told that, when under anaesthetic, if she struggled to breathe (as she wasn’t controlling her respiratory system in the same way while under) they would like permission to fit an emergency tracheostomy there and then. Consent forms were waved in our faces and Mark signed while I looked down at the sleeping bundle that was my daughter and felt sick.

We had to undress her. Strip her to her nappy. And then she was transferred into an incubator, while we made the journey down to theatre. The first incubator was faulty, so she had to be moved to a second and my baby girl was getting upset and I don’t know if you’ve ever had a crying baby but not been able to comfort them… But it’s horrible. I felt frustrated and useless. And in a moment of madness I wanted to steal her away. I remember clutching the sleepsuit she had been wearing in my hands and trying to swallow but the lump in my throat was painful and I was slowly starting to break down. We were told about the risks of a tracheostomy and words like “infection” and “punctured lung” were floating in my head. And I was so panicked that my baby would be returned to me with a tube in her throat, or not at all.

We were allowed in briefly to say goodbye and I felt so stupid trying to say goodbye to my baby, while a team of medical professionals watched on. I couldn’t get my head near her to kiss her, so I just stroked her head and tried to whisper: “I love you.”

Outside, I broke down. The guilt was too much then and I cried in Mark’s arms. Having a baby away from you is hard. Having a baby who isn’t well is hard. Having to go through this is hard. But the guilt I have is making everything worse. The nurses who had taken her down, and been caring for her that day, tried to comfort me too. And I blurted out: “I just feel so guilty that she has to go through all of this because of me.”

Because Daisy is Daisy because of me. Daisy has her struggles because of me. Because she has my syndrome. Our syndrome. And I have had to look at that fact, every day, when I look in the mirror and see our similarities. When I look at my baby albums and I feel like I’m looking at my daughter. And when I look at her tiny face. And I hate myself for it.

I can’t escape the fact that she is in this position here and now because I have a syndrome that had a 50% chance of passing on to my child. And what’s harder is that, when I’ve mentioned it in the past, a lot of people look at me and think, well, it can’t be that serious, Charlotte is fine. And hell, I thought the same in ways. I thought I was fine. I feel ‘normal’. I know no different. But I am now in the front-row seats that my parents sat in before me. And I can see that ‘fine’ is something that came with time.

I have Marshall Stickler Syndrome – at least, that’s what is down in my medical history. Mostly, it’s referred to as Stickler Syndrome. Though, as my dad explained to me and Mark in the car on Friday, as he collected us from the hospital as our car was having it’s MOT (timing, as always, is great), it was said that I almost had ‘Charlotte Syndrome’ as I had a very mild form of Sticklers, and my body was healing any issues I may have had over time. The syndrome can have severe sight and hearing problems, resulting in being deaf and blind. And joint issues that can leave the sufferer in a lot of pain.

And I got lucky. And I was told, when my belly was swollen, years ago, with a baby Bill, during genetic counselling, that the worst I could pass on would be my strain of my syndrome. So when Daisy focused on my face for the first time, I cried. When she smiled at me the other day, and we were certain it was real, Mark and I felt like we’d seen the sun for the first time. And when she passed her hearing test, I whispered “thank you”. I don’t know who too. But the signs were good. She was doing okay. And of course, further tests will be needed. But the relief in these areas have offered me a lot of respite from this.

The only issue now, which is why we are here and now, is because our syndrome often includes a ‘symptom’ known as Pierre Robin Sequence (PRS). A sequence of three things – a cleft palate, a small lower jaw, and glossoptosis, which is the positioning of the tongue. This leaflet is extremely helpful for those who would like to know more, but these three things mean that Daisy has difficulty breathing as you are now. Her tiny jaw, like mine used to be, means her tongue is set far back, and the positioning means that her tongue falls back and blocks her airway. Which is even more problematic with a cleft, as she really only has one shared route for breathing, unlike a nose and a mouth normally would work, using one or the other.

I was the same. And so both Daisy and I were fitted with a nasopharyngeal airway (NPA) and have both thrived on it. The day Daisy was fitted, she transformed. She didn’t panic anymore. You could hold her in any position. Her oxygen saturation was stable. And her blood gasses showed that her CO2 levels were dropping every day. In fact, before she left Macclesfield she was no longer having regular bloods taken as she was at a normal level.

Babies with PRS tend to find that their jaws grow and move forward with time. And they start to transform. But it’s just a little time that’s needed. In the meantime, the NPA acts as a splint for the tongue, and also keeps the airway open, by having a clear route down the nose. Pretty it is not. But it works. Mine was removed when I was eight weeks old, which is early, and probably may have been too early, but this was 28 years ago and I did brilliantly either way. The plan was for Daisy to keep hers until around three or four months old and we were content with that. We could have her home. Give her the care she needed as we’d been trained to do. And wait it out.

But now we’re in a different hospital, with different rules and preferences, and we’ve been advised she have a tracheostomy so that, in case of an emergency, she has a clear airway at all times. Because her airway is a grade three, which means it’s difficult to pass an airway in the usual way.

And obviously you hear the words ’emergency’ and you panic. You think – should we do this? Is this best for our child? But actually, a tracheostomy is designed for people who cannot breathe on their own, for whatever reason. And Daisy can.

But then there’s the ‘what ifs’. The fear of God has been put in us now and we don’t honestly know what to do. A tracheostomy would be for a year, or even two. And that would mean she couldn’t speak. We wouldn’t hear her laugh, until perhaps she was older and they could fit her with something to help. She could have feeding issues. And the procedure is not without its own complications.

A lot of people we know – medical and non-medical – have been either shocked or confused that this is a possible outcome. And we have this gut feeling that we can’t seem to shake. But now we face a decision and I am terrified that we will make the wrong one.

We’ve asked for a second opinion from Alder Hey, and our ENT consultant has encouraged this because we have to be happy with the outcome. Ultimately, we have every right to refuse a tracheostomy and take Daisy home as planned, but we are staring at two pathways that are not without risk. And I honestly cannot tell you which pathway we will take. It’s times like these I wish someone would make that decision for me. I actually wish we could ask our tiny daughter. What should we do Daisy?

What should we do?

I have not stopped thinking about this since the moment a decision was placed in our hands. And the longer we take to decide, the longer our daughter is in hospital without us, but we can’t rush something that involves her precious life.

I miss our local hospital. I miss the team that had become our family. Who knew our daughter and have seen us grow from broken-hearted parents to something stronger. I miss the distance being just 20 minutes. Not an hour. One of the nurses came to our house with Daisy’s things on Friday night. The things we left because we all thought she was coming right back. She lives in our village. And wanted to help. And I was so grateful to see her and for what she did. I don’t think you really see the good in people until times like this and people surprise you. And that goes for every single person who has reached out to us. You are like rays of hope on darker days.

I am trying so hard to keep going. I’ve done the best I can to keep focused for both of my children. I don’t want my son to have to remind me to smile. I don’t want to let my daughter down. I don’t want to forget to buy Bill’s birthday presents and order the farm animal cake he wanted. I don’t want to bicker with Mark when we are both pushed to the limit. I don’t want to stare at the mess that is our house because we just haven’t the time or energy to keep on top of it. I don’t want to keep avoiding Daisy’s nursery because it hurts to even glance at the door. I don’t want to be here anymore. I want to be at home with my daughter, my son, and my wonderful Mark, sleep-deprived, content and happy.

But instead we are here. And I don’t know what to do.

All I know is that I love her and I’m scared.

And I want to do what is best for her.

Whatever that might be.

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No Comments

  • Reply
    lucy at dear beautiful
    22nd May 2016 at 9:05 am

    Oh Charlotte, parenthood is always so paved with those guilt-inducing, is-this-the-right-thing decisions… and you have such an impossible one on your plate when either could be for the best or could bring its own dangers. A second opinion sounds like absolutely the right thing, because you do definitely need to feel happy (or as happy as possible) with the decision you make. Follow your gut… half way between your head and your heart. Daisy knows you love her and are doing it all for her.
    Sending so much love your way Charlotte, and Mark, and Bill and Daisy. You are never far from my thoughts and I feel so sorry that you are having to walk this scary road. xxxx

  • Reply
    22nd May 2016 at 9:49 am

    Oh Charlotte you are doing amazing. There is nothing in the world that can prepare you for mummy guilt which is one of the most painful experiences but you are handling this with amazing courage. It's ok to break down and cry, there is no shame in it. Daisy knows that you love her more than anything and when she is older you will look at her and feel beyond proud not just at her but at yourself and she will be so proud of you to.
    Chin up. It's hard now but your little girl has a life time ahead of her. She will be home in her room you and mark stay strong xxxxxxx

  • Reply
    Gemma Murphy
    22nd May 2016 at 6:27 pm

    On Boxing Day 2013 we attempted to extubate Martha for the third time, we had been warned that if she failed because her heart couldn't cope with the work load – then she would have to be fitted with a tracheostomy.

    Martha struggled, her chest was recessing like crazy and she turned a deathly shade of grey…she was failing! I cried and cried for the intensivists on duty to re-intubate her and get things in motion for a tracheostomy. I was scared that if they didn't act quickly that day then she would die!

    They asked me to give her 20 minutes to see if she came around, and then another 20 minutes and then another. Before I knew it 4 hours had passed and Marth had calmed down.

    But that afternoon, I would have happily signed the consent forms to and whizz her down to theatre because I didn't want to lose her. In my head the trach would help her with something she couldn't do for herself.

    I had done all the research and made peace with the technical difficulties and logistics of a child with a trach; reached out to other parents to have their first hand experience of day to day life – not just a leaflet and doctors advice.

    Whatever choice you make for Daisy will be right choice. And whatever choice you make – you'll doubt yourself either way.

    Sending you lots of love, from a Mam who's been at the front line of making life – or – death decisions for her baby xxxx

  • Reply
    Danielle A
    23rd May 2016 at 8:51 am

    Oh my goodness Charlotte that must be such a gut-wrenching decision to make. Sending lots love over to you all and hope that the 2nd opinion helps too. x

  • Reply
    Jenny Ripatti-Taylor
    27th May 2016 at 9:17 am

    Oh babes you are stronger than you think, braver than you feel and you will make the best decision you can in the time you need to. You have such a full plate and every parent has those did I do it right, am I doing it right feeling and you have so much more to figure out on top of it. The guilt of having the syndrome and passing it on I understand is hard but look at it from other angles if you can you both are connected in that same way no one can understand her better than you and your parents are the best guidance for you having gone through it themselves. You all can stay strong together and she is just gorgeous and is doing great because you are her strength her everything. Bill knows his mommy loves him and is young enough that he won't remember must of this time and when you are all home together you can make those amazing memories that last forever together for the rest of all your lives. I also say there is nothing wrong with a few opinions so you know all your options and have as much information as possible. A third opinion even if it makes you feel assured you are making the right decisions you fight her corner like you have done. 😉

  • Reply
    Kerry Villers
    27th May 2016 at 9:06 pm

    Oh bless you Charlotte, I've been following your blog for a few years now and I love it, and bizarrely, I feel like I know you. I was so happy for you when I read you were pregnant with Daisy, I'll admit I'd guessed before the announcement, I recognised your beautiful writing in a guest blog elsewhere, and now I'm so very sad to hear what you and your family are going through. We spent just one week with my eldest on high dependency when she was just 5 weeks old and it was the worst week of my life. We had an incident where the doctors were trying to stick needles in her, first in her arms and then in her head. She became so distressed that it came to a point where I had to make them stop. Which was terrifying. She was telling me to make them stop, but what did I know? How could I know that was the right thing to do? I totally understand how conflicted you must feel and I only wish I had the answers. I can't imagine how it must feel to live with everything up in the air for so long. I hope your gorgeous girly is on the mend soon and this period becomes a faded memory for you all xxxxxxx

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