We were at Keith’s brother’s wedding the day before our 20-week scan. It’s generally called the gender scan, so everyone was taking bets on whether Finley was going to be a boy or a girl. Even though it was also an anomaly scan, it didn’t cross my mind there would be any issues.
We had the sonogram and Keith and I could see on the screen straight-away there was something under his chin. Over the next few minutes, different members of the medical team came in to look at the scan. We were terrified. Eventually, they told us that we would need to come back in a couple of days and see someone more senior. I remember the sonographer telling us that we were having a boy, but it just felt such a non-event after everything else we had been presented with that day.
Those two days were just unbearable, it was the longest wait because we had no clue what was going on. We saw a senior consultant who told us it could be chromosomal or a tumour, but at this stage they weren’t sure. Within that same week, we were referred to Southampton General Hospital and received the diagnosis that Finley had lymphangioma. It is a rare condition and the consultant said he probably sees one case every couple of years.
Lymphangioma is a malformation of the lymphatic system (usually on the head or neck or where lymph vessels are located elsewhere in the body) which can vary in size. Cysts are formed when lymph fluid backs up and doesn’t flow normally through tissues, so it collects in one place and forms the cysts. The exact cause is unknown and there is no cure, with the cysts often becoming more noticeable with age.
During those appointments, it was described to us that Finley would most likely look like he had a big double chin. But when he was born after an emergency C-section, Keith and I were both really quite shocked as the cyst was much more extensive than just a double chin. Finley had to be resuscitated straight away and I held him for what felt like 30 seconds, before the medical team whisked him away to the Neo-natal Intensive Care Unit (NICU) to stabilise him and put him on oxygen to help him breathe.
Finley did come off oxygen a few times over the next couple of weeks, but they kept having to put him back on. He had a nasogastric tube fitted too. Then they tried interventions to take pressure off his airway which seemed to work for a while, but then his airway would get bad again. After that, he had debulking surgery to take out a lot of the mass from his neck and throat – he still has a big scar under his chin from that – as they thought that might help improve his airway. Finley was intubated for the surgery, and they tried unsuccessfully to extubate him three times afterwards. The last time was on Christmas Eve when he lasted 12 hours but had to be reintubated on Christmas Day. It was the worst Christmas Day I could ever have imagined and so unbelievably different to how we pictured our first Christmas with our new baby.
We were living at Ronald McDonald House at Southampton hospital for three months and didn’t really see anyone because of the risk of COVID. We were in hospital for six months in total.
In early January, Finley had his final trial extubation which was unsuccessful again and that’s when he had his tracheostomy placed. That was really the point that changed our lives forever. It’s the tracheostomy that makes him a disabled child. It comes with so many implications that we couldn’t have even imagined at the time, we had no idea. When you’re in hospital, your focus is completely on keeping your child alive and you battle through each day, you just can’t even imagine what the future is going to look like. But the future is really where Julia’s House comes in; the point at which you get out of hospital and return home, because you realise how much more there is to it when you’re at home.
After the tracheostomy, Finley kept getting poorly with all different types of hospital-borne infections. Although being in hospital was a really safe place, it was presenting risks that wouldn’t have been there had we been at home.
“The toll on our mental health was just shocking really and I don’t think we were fully aware of that until now. In hospital, you are on constant survival mode because you are trying to make sure your baby survives. We saw many babies and young children that didn’t make it. I kept getting a sense that we were existing in this underworld, this parallel universe that has always been there, but until you are in embroiled in it yourself, you wouldn’t know. Now we’re suddenly part of this club that no-one wants to belong to.”
One thing that really sticks out for me as a memory, was packing everything up from Finley’s room at Southampton hospital. There were so many supplies we had to bring home with us! It was so fantastic though to finally unpack all his clothes, use his toys and baby bouncers – all the things we couldn’t take to the hospital. But Finley got a couple of infections and after about two and a half weeks, we had to take him back to hospital which was the worst feeling.
Finley went back as an inpatient at Poole hospital, while the care package he needed was set up, and Keith and I travelled to the hospital every morning and back every evening every day for the next three months. Luckily, we have a really good respiratory nurse who is a strong advocate for us - she was the one who introduced us to Julia’s House.
“The support Julia’s House provides is taken into consideration by the local Integrated Care Board who approve your care package – that’s how important their care is. There are just so many aspects to their care and support. I feel like it doesn’t matter what kind of person you are as a parent as every family is different, but there is something for you. I can’t think of another charity or organisation that offers the same. Of course, they are there for the children and what they are offered is just incredible, but it’s supporting the families around the children too, so they are in the best place to care.”
At first, I found it hard to picture what Julia’s House care would look like and what difference it would make to us because it was all so alien – I didn’t know what a community sit was or a hospice session. You just don’t how to make it work because you’ve never done it before.
We first met with nurse Jen to talk about what kind of care would suit us best and agreed it was the community sits - we were cautious about Finley from an infection point of view, we still are, but certainly were for the first year after coming out of hospital. Can you believe the irony of us all catching COVID at Finley’s first birthday party? It was our first ever gathering.
As things are progressing, we’re keen to do more hospice sits so Finley can mix with other children. We are trying to get him into a mainstream nursery, but we do want him to connect with other children who are medically complex too, because we want him to understand he’s not the only one and that there are other children going through a lot so he can build those friendships as well.
Jen and Amy are brilliant. Every time we see them they say you know where we are, just contact us. They are always thinking about practical ways they can help us. They are both really good listeners and my first port of call for anything, as I know they’ll direct me to the right person if they can’t help. We’ve been directed to the Julia’s House social worker who helped me with Finley’s Educational Health and Care Plan (EHCP), been spoken to about the availability of counselling now we are coming to terms with the mental health impact of the first two years of Finley’s life, plus all the events and family days. And it might seem superfluous, but the complementary therapy is so valuable too. It is something I would never have arranged for myself because I would have felt guilty leaving Finley or wouldn’t have had anyone to look after him, so the fact that the therapist can come to our house, or we can go to the hospice is amazing. I’m starting to realise how important looking after yourself as a parent is and that there is no need to feel guilty.
“As a parent of a child with a complex medical condition, you find yourself in this different world and your friends, unless they’ve been through something similar, can’t really relate to you in the same way, so you can find yourself a bit of an outsider sometimes. But at Julia’s House you meet other parents who are going through the same thing as you. Their care enables those social opportunities for parents and families that you wouldn’t otherwise have and the impact of that is huge.”
We try and arrange sits too when Keith and I can be here together as apart from Julia’s House, we don’t get any time on our own. Ironically, we probably do more together because of Julia’s House than other new parents might, as it is just so special to us as we know how difficult it is to get the time together. We don’t have a grandparent to ask, “can you just pop over while we go out for dinner or go to the cinema?”. When we do have the nurses and carers to look after Finley, we make sure we do something: spend time together, get out of the house, go for a nice walk around the Purbecks, do something that we can’t do with Finley. Things that other parents might take for granted, for us is quite special.
There is no cure for lymphangioma; it’s not going to go away. Finley is on medication to try and reduce the size of the swelling, which we think is helping, and we go up to Great Ormond Street regularly for reviews. There’s a new drug therapy potentially available in the next five years which is looking promising and could be good for him. Finley’s had multiple surgeries already – MRIs under general anaesthetic, aspiration, debulking surgery, coblations (burning off cysts from his airway) – but he may need airway surgery later in life, they’re just monitoring how he grows at the moment. He’ll have future MRIs to see how the medication is working, which means general anaesthetic again as he’s so little, which comes with its own risks. He has to have regular blood tests for this medication, which he’s growing to hate as he’s that much older. He’s very brave but obviously doesn’t like it which is quite upsetting. All of these ongoing medicines, tests, checks, reviews, surgeries, you just don’t think about initially but they’ve become part of our routine for the rest of our lives.
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