Prematurity

I was 33 weeks and 1 day pregnant when I gave birth. The day is ingrained in my memory. It was something that was not really on my radar, though it was always a possibility with identical twins. Everything was going well, better than well. But when things went wrong, everything went wrong.

It’s when there are so many doctors and nurses in theatre, a team for each baby as well as for you. The room is so crowded that people literally stand around the edge until they’re needed, and they know so perfectly when they’re needed that there isn’t even chaos. They work together in perfect harmony when your life is potentially falling apart when your children are critically unwell. I remember trying to see what was going on, but I was lay, strapped to the surgical table, still being operated on.

And nothing can prepare you for the moment you see your children in SCBU. The wires, the machines, the tubes, the lights, the nurses and doctors, the smell, and the pity on people’s faces. Not one but two children are seriously unwell. You have all of the questions, and you ask them all apart from the one you really want to ask- will my children make it?

You quickly come to learn to know the sounds of the machines- which machine to watch and worry about, which machine always goes off but is never really a concern. You learn what each wire is for, and how to move and use them. You wonder why your child is silent until you realise, they can’t make a noise because the tube in their throat is in their lungs and when they open and close their mouths silently, they are actually crying. Then you wonder why it took you days to realise that.

You learn which procedures are standard and need to be repeated and which to be wary of. You learn it all, sitting by their bedsides for nearly 24 hours a day, 7 days a week.

You become institutionalised to a medical world you never knew existed. The hours turn to days, and days to weeks. Thankfully my babies became well enough to come home. But our journey through SCBU will live with me for the rest of my life. I’ll be forever grateful my babies came home but forever traumatised at everything we went through.

World Cerebral Palsy Day 2021

A day to raise awareness. A single day each year, for a condition that affects millions. And it isn’t even a condition, it’s an umbrella term. Cerebral Palsy is as different for each person diagnosed with it as their fingerprints.

One person with Cerebral Palsy may be able to walk and talk and their disability will have minimal impact on their lives. Others will be so disabled they are not well enough to leave the hospital. Then you have every variation in between. Like I said ‘Cerebral Palsy’ is an umbrella term.

For Alfie, his Cerebral Palsy is defined as ‘Spastic Quadriplegic’. It affects his whole body, external and internal. For anyone with Cerebral Palsy, that is not who they are though- that is their disability. Alfie has Cerebral Palsy, but Alfie is also a twin. They just turned 5 and are still getting up to mischief together!

Alfie cannot walk, unless in his MyWay walking frame, sit or crawl, but Alfie can roll. And my goodness, he is quick! He waits for us to leave the room or look away then rolls as quickly as he can to cause as much havoc and mischief as possible, then cackles when he is caught. Sometimes, he even has the good grace to pretend to be sad as we move him away from whatever he shouldn’t be doing, but normally he belly-laughs as we start to say his name.

Alfie also loves to read. No, he cannot read himself, he is only 5, but he loves us to read to him and to look at his books as he is playing on the floor. His favourite story is The Gruffalo, he loves the repetition and anticipation.

You see, regardless of his disability, Alfie is just a little boy. And just like any other child, he likes to play and sees the best in others. That is what is important, don’t see the disability, see the person. See what they can do instead of what they cannot do. See their likes and interests instead of what makes them different.

Say hello and include them. A disabled person is still a person and has the same worth as someone who isn’t disabled. It isn’t until we see past a person’s disabilities that we truly see the person and that is when society will truly be inclusive.

10 Things the Parents of a Disabled Child Want You to Know

  1.  We’re just like you. We love our child unconditionally and to us, our child is perfect. Yes, if I could, I’d take his disabilities away but that doesn’t mean he is any less perfect.
  2. At times we get fed up, we’re only human and life is sh*t sometimes. No, I wouldn’t choose this life for my child but it’s the life he has been given so I’ll make damn sure he’s the happiest he can be.
  3. My child is nothing to be feared or avoided. He cannot speak and struggles to move his arms and legs, but he is a child, just like yours. He is a child just like his twin, he just happens to be disabled.
  4. My child throws tantrums just like your child, but these can often be on a bigger scale because he can’t communicate verbally what is wrong. It can take us longer to soothe him but that doesn’t mean his feelings are any less valid, he simply needs love, care, and attention.
  5. My child loves to play just like every other child. He is happy and wild. He loves reading books and getting up to mischief.
  6. Having a disabled child does not mean we’re ‘rolling in it’. Contrary to popular belief, disability benefits are minimal. Despite Alfie having a diagnosis that will never improve, every few years we have to apply again, giving the same information, filling in time and time again what Alfie cannot do.
  7. The NHS/Government does not provide everything my child needs, it’s why we fundraise. We get the bare minimum. Though we are grateful for the equipment we are provided with, it is often old equipment that needs updating and is more cost effective for the NHS. Cost always plays a big factor when a child needs a new piece of equipment- often bigger than needs and suitability.
  8. SEN parents are basically doctors, and that is no way intended as an insult to doctors. We need to know everything about our children, past issues, present and potential future. We also get trained in a matter of days, things it takes doctors years to get signed off on (no joke). The medical terminology and techniques become second nature- you need it to care for your child and keep him alive.
  9. I don’t know how I do it either. For us, this was never a choice. Our child is disabled, and we will always be there, no matter how hard it gets.
  10. I’m not superhuman and every time someone says anything along those lines, it reminds me of how different my life is. It reminds me of everything Alfie should have had.
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Types of tube feeding

This time last year, the only experience we had had of tube feeding was when Rory and Alfie were in SCBU as new-borns.

But in the last year, everything has changed.

We have done NG tubes, NJ tubes, G-tube, and GJ-tubes and now we are back to our MicKey button.

So, I thought I would write about what we have been through, to hopefully provide helpful (rather than clinical) information to anyone who may be at the start of their journey.

For us, any type of nasal tube was absolute hell for a multitude of reasons.

We did NG tubes for roughly 2 months and though they are easy to use once passed, the trauma of having the tube passed was truly horrific, and Alfie struggled to tolerate the tube when it was in- we never managed to keep on in for more than 12 hours which would mean a new tube had to be passed each day.

For NG feeding, the steps are PH test, flush, feed, flush, finished. Simple and easy, though gravity feeding takes its toll on your arm!

NJ is similar, but significantly different all at once.

Any feeding tube that is jejunal requires the feed to be done very slowly as the liquid is going into a small part of the intestines called the jejunum, rather than the stomach.

For those suffering severe reflux, it can be ideal but is not without its problems.

For NJ tubes, the passing of the tube is not easy, the tube must be ‘floated’ down gradually, which means an NG tube with more length being pushed further down every half hour or so until it goes into the jejunum, and this is confirmed with an x-ray.

We never had one successfully passed with Alfie as each time they tried, Alfie either ripped it out, or the tube wrapped back up out of his stomach into the oesophagus rather than going into the jejunum.

We did, however have a GJ tube (gastro-jejunal) tube for quite some time so have had our fair share of jejunal feeding, and I must say, it was tiring.

Jejunal feeding is nearly constant.

Alfie was fed for approximately 19-20 hours a day and the bowel movements are something else (picture poo everywhere several times a day!).

It was also worrying as there is always a tube around for little hands to pull or to get caught on something when playing, so we never felt at ease.

Finally, there is the MicKey ‘button’.

Our little, ‘low’ maintenance feeding tube. Though it has been the best fit for us, it is still tiring sometimes.

Each week we have to check and change the water in the balloon which is nerve wracking as that is how the tube stays in place.

But on the whole, using the tube is relatively easy.

You attach the extension to the button, vent the stomach if needed, flush, feed (we use a pump or syringe dependant on feed type), flush and detach the extension.

Never being complacent

Life during the pandemic for many has stopped, but although there have been delays and changes to the way we have our appointments, our appointments have continued because the simple fact is, they have to.

SEN life does not stop, not even for a global pandemic.

This week we had our latest review Alfie’s paediatrician via telephone.

I went into the call pretty positive, thinking Alfie was doing well, and though he is, and he never ceases to amaze us, it still was not an easy appointment and threw up some things I was not expecting.

We discussed Alfie’s medications and whether they were working, I explained I was concerned that his stomach acid PH is still high despite the medication he is on, and she said she would make a referral to the gastro team.

And that was that.

She then asked if there was anything else that I wanted to discuss, and before I knew it, I was voicing a lot of concerns without realising.

Such as wanting more information on SDR surgery and Alfie having an MRI scan to ascertain the level of damage to his brain, and the possibility Alfie is having vacant seizures.

The school had mentioned it, and I had felt like the world’s worst parent for not noticing.

Alfie has been going ‘blank’. I thought he was simply daydreaming, but the reality is he may be having seizures.

Another thing for our boy to deal with.

Straight away our paediatrician came up with a plan of action to look into things further and get Alfie whatever help he may need, but it was not a conversation I felt prepared for, nor one I intended to have.

Alfie’s future is so uncertain and when things get thrown up like this it gives me the worst anxiety and sense of panic.

It feels as though whenever things seem to be going ‘well’ for us (and I use that term loosely), something crops us and sets us back.

At Christmas, Alfie vomited, despite having had a fundoplication, after things had been going well with his feeding tube and he had lost some weight, we got that back on track and now this.

I have been reassured that if Alfie is having seizures, then they can be managed with medication, but the mere possibility he is having seizures was not something I was prepared for and truly brought us crashing back down to Earth with the unknowns that come with having a medically complex child.

Don’t fear the tube

When we were told Alfie had an unsafe swallow and would need a feeding tube, it felt as though it was something else for us to grieve, another loss to overcome, another thing to learn and get used to.

All I could think of was how much Alfie had lost, how much he enjoyed food and would miss it, how far he had come in learning to feed himself his drink and how heartbroken I was.

All I could see were negatives and how it was one more thing for us to go through.

Another parent was in x-ray at the time we found out, I was sobbing after Alfie’s barium and asked her about her child.

He had a feeding tube and was having a feed whilst we were sat there.

It just looked so clinical and I was terrified.

I was horrified when she said she loved her child’s tube. How could she, I thought.

I judged and I could not understand how she could feel anything but upset towards it.

But Alfie has been tube fed since May 2020 and I now know what she means.

Our tube feeding journey has not been easy by any feat, but nearly 1 year on and Alfie is doing so much better and the benefits of the tube far outweigh the loss.

Alfie is healthy and well, he is gaining weight and the stress of Alfie not eating well or drinking enough has gone.

Alfie is allowed food orally for taste and oral pleasure provided they are not liquids or similar but are also not completely solid- basically foods that melt are ideal such a quavers or very thick yoghurts.

Instead of sitting and slowly feeding Alfie for hours and pushing when he is tired, we connect his tube and away we go, whether he is awake or asleep.

Gone are the days of falling asleep worrying that I would need to make sure Alfie ate more the next day, now I know exactly how much Alfie has had and the calories he has consumed.

Sometimes it does feel too clinical, and of course I wish Alfie were able to eat orally safely, but he cannot, and we have to make the best of what we have.

The most important thing is we have a way to feed Alfie that keeps him safe.

Four Years Later

Alfie had his fundoplication surgery in August, and I can barely look at the pictures of him from when he was in hospital. The surgery itself went well enough, but Alfie’s recovery was not straight forward. Alfie is a prem baby, a SCBU graduate. He was gravely unwell, and he came home on oxygen. Alfie needed oxygen once more after his surgery.

This follows the weeks of cannulas and x-rays and blood tests and procedures he had endured during his last stay just a few weeks before.

Honestly, I barely coped.

When the surgery had finished and I was called to go and see Alfie in recovery, I immediately knew something was wrong as Alfie needed suction for secretions. They reassured me this can be normal, but this is a child who has had numerous surgeries in the past and never needed it.

When we got back to the ward, things just got worse. Alfie simply could not breathe. The machine alarmed and Alfie changed colour. His saturations continued to drop before my eyes and nurses came running in to help. Alfie could not even cope with the oxygen mask on his face as he has his own PTSD from our 6 week stay of nurses and doctors doing procedures on him, so would scream and hold his breathe as they tried to help. We had to turn the oxygen up to full capacity and I held it inches from his face so the oxygen would help but he would calm down. That was how we spent our night.

Alfie had so many desaturations that night that I lost count. Even with the oxygen helping him to breathe, his body just could not do it. And all I could think of was him being a new-born baby. His tiny, pale body in the incubator, with what felt like hundreds of wires and lines connecting him to machines. And that is how he looked again, but this was nearly four years later. Four years and we were back to the problems we had had when he was a premature baby.

We were back to the question of is Alfie going to get better.

After a lot of suction and chest physiotherapy, Alfie managed to start breathing on his own again and was discharged shortly after. But the trauma is ever present. Any time Alfie coughs, or his breathing goes quiet, I panic. I am back to having the baby monitor on higher settings so I can listen for changes in his breathing overnight. My body wakes when he goes quiet and I cannot settle again until I physically check he is ok.

Though Alfie is recovering well, mentally we are back at square one with the struggles he is going through.

Imagine

Imagine living your life and there always being someone telling you that you cannot do something.

You wake up one morning and want to go for a walk. No says the person. You ask why but there is no answer.

You get ready to go shopping but as you approach a place, no says the person, you cannot go in there. Again, you ask why and again there is no answer.

You take your child to the park, but the person blocks your way and tells your you cannot enter. ‘Why?’ You say, but as always, there is no answer.

Imagine that happening, every day of your life. And imagine that person being society and the world you live in. There is no answer because there is no one person. It is the steps to an entrance instead of a ramp, the pavement with cracks and potholes and kerbs without a dip; it is the park without an inclusive playground, the shop with the doors too narrow and the aisles too blocked and cluttered.

Would you accept that? Would you accept that for your child? The simple answer is no.

Do not ignore it. Do not pretend it is not happening. Turning a blind eye makes you as bad as the person who could make a change and chooses to pass the responsibilities to someone else.

It is the fault of every person who passes the buck and says it is not their problem. It is every person who turns a blind eye to what is happening before them. I got my MP involved who contacted the Secretary of State for Housing, Communities and Local Government to raise the issue.

The response received was not even from him. An issue that effects hundreds of thousands of people was not important enough for him to address himself. And the content of the response was pitiful. It attempted to state this issue is local.

Sadly, this issue is not local, if it were, I would move to a more inclusive part of our country. This is a national issue. It is a national problem that not all areas are accessible for the disabled community.

Legislation states ‘reasonable adjustments must be made to prevent those protected characteristics (including disability) from experiencing a disadvantage’ (Equality Act 2010). Well, where is the equality?

I want to take my child out without having to worry whether he will be included or not. I want to know there will be suitable changing facilities in place- that I will not have to lie him on the floor to change his nappy because he is too big for the baby changing station. That restaurants will learn to cater for people who are tube fed so I do not have to worry about taking food with us specifically for Alfie.

Make the change. Be the change.

Surviving Hospital

Alfie has spent a lot of this year in hospital, and though most of our hospital visits are planned (appointments, surgery, etc), one in particular was not, and they all came with complications.

Alfie had a gastrostomy in May and that was supposed to be the end of things – he would be tube fed and his lungs would be protected. But of course, it was not. I noticed in the days after Alfie’s surgery his reflux was getting worse, but we were sent home anyway.

We were told to take Alfie back to hospital just a few weeks after discharge.

When we got there, we found out he had lost nearly 20% of his body weight. Nothing they did stopped the vomiting, and this was the start of our longest hospital stay to date, other than when Rory and Alfie were born.

Alfie continued to deteriorate as he could not tolerate any gastric feeding, not even water. The weeks went by and Alfie became more unwell, losing 30% of his body weight in total and dropping down to just 11.9kg. For context, his identical twin is nearly 18kg.

Alfie continued to become more unwell and the only way he kept hydrated was via IV fluids. But every few days he would pull his cannula out or it would tissue on its own. Soon they were struggling to find suitable veins.

Alfie had developed anxiety over the nurses and doctors coming into the room and his heart rate would spike dangerously every time they came in. The procedures became more difficult to do and no one had a plan.

Everything had been tried and it had failed.

This was after watching my child literally vanish before my eyes. No longer was my little boy chubby, happy, and playful. He was malnourished, dangerously underweight, pale, and tired. He would nap throughout the day and night because he simply did not have the energy to stay awake.

There were times we questioned if Alfie would get better. He had so many complications and the doctors were unsure of what to do. Each thing they tried would fail and the situation would become more dire.

Though Alfie is recovering well physically, the mental trauma is still there. Alfie screams when any medical professional comes near him and is inconsolable. In time I hope Alfie will begin to realise not all medical staff will need to do procedures that are painful and upsetting. I hope he begins to trust them again and that this has not caused long term problems for him.