Juliette’s Story

On 26 May 2015, three days late, a beautiful dark haired SWAN was born. I had a completely normal pregnancy, with the exception of a lot of hiccups. There was nothing to worry about, all scans were normal and we didn’t know what we were having. As soon as Juliette came out I had concerns. She didn’t cry and wouldn’t feed very well. However, we were taken to the ward as normal so we could both get some rest.

10 hours after she was born she still hadn’t slept and had been very active with her limbs. I asked the nurse to take her while I tried to get at least 10 minutes of sleep. It wasn’t long before they came back in and started asking me questions: ‘Did you smoke during your pregnancy?’, ‘are you related to your husband?’, ‘did you have herpes?’ The doctors took her up to the neonatal intensive care unit and explained that she had been having seizures. When my John and I were able to see her she had wires all over her head and was still moving her arms and legs but we were able to have a cuddle with her.

10 days later we were then told: ‘there is nothing more we can do’. She was baptised, we took her hand and footprints and made the difficult decision to remove her from her medication and remove the ventilator. She wasn’t breathing on her own therefore they had no reason to believe she would survive.

Juliette, however, had different plans. She struggled a lot to breathe and her heart rate dropped to almost only 10 beats per minute. I was convinced she had died at a few points. However, she somehow survived and we went home on palliative care.

Nearly two years later and she is still very much here. Juliette is a difficult girl to read. She does an awful lot of shouting, which can be a bit embarrassing in small spaces like lifts! We are yet to find out what the shouting is and how to treat it.

I suppose Juliette’s biggest achievement to date is that she is still here, oh and sometimes she tries very, very hard to follow either a light or something brightly coloured, with her eyes but it’s quite difficult for her.

Juliette has very varied tone. One minute she’s like a jellyfish, the next as stiff as a plank of wood. Sadly for us she has never smiled, but sometimes it looks like she does with her eyes, despite being almost blind. We know she’s happy when she’s quiet, and she does a little noise ‘oooooooh’ and looks like she wants a kiss. We often sing Adele’s “rumour has it”, when she does it so that will give you an idea of the noise!

Juliette has not hit a single milestone since she was born and is more behind than a new-born baby. However, nothing has changed and she has remained the same for nearly two years, which to us seems like a positive thing as she hasn’t regressed in any way.

The one thing she can do is eat a pureed meal. As John was a chef, she does get some very good meals which he lovingly prepares, and then liquidises! It seems like a waste of time, but it makes us happy knowing she’s eating a tasty meal.

Describing Juliette’s condition is difficult. To me she looks relatively normal, and I always feel I have to explain her disability and condition so that people don’t start thinking things in their head. For us, the unknown is quite a scary prospect but we try not to think about it too much as we know one day the inevitable will happen.

When did I realise that things were going to be different? I suppose I still haven’t realised it, or maybe I don’t want to. As no one can tell me what is wrong with Juliette I still think they may have got it wrong.

Three months after Juliette’s birth we found out we were expecting baby number two. It was a risk but we decided to take it. Because of the pregnancy we had a lot of genetic testing. A change was detected in Juliette’s mitochondria, but it transpired that I too have the same change so therefore that couldn’t be it. Due to nothing being found we were put on to the 100,000 Genomes Project. A year after we signed up, an admin error meant our samples hadn’t been looked at. Now thankfully, all is sorted and we await news, although we have been told and are well aware, that it is highly unlikely to find anything, and that she will remain a SWAN forever.

I would never change anything about Juliette, I love her just as she is. I just hope she is in no pain and that she knows to love me. Obviously, we planned for a totally different thing, but this is what we have. My only regret is that I didn’t speak up enough and push for things to be done in the hospital.

If we get a diagnosis, it won’t necessarily change things. In fact, it frightens me, that it may tell me what I don’t want to know. However, it could help us treat her correctly as she is unable to take certain medications at present.

The best thing I have learnt is that children with disabilities are amazing – when they reach milestones it is so much more beautiful than a non-swan (I wrote normal there, but a) that’s insulting and b) there is no such thing as normal) where you just assume they will do certain things and take them for granted.

I feel positive about our future. There is no reason for us to feel bleak. What has happened has happened, and we play with the cards we were dealt.

We found out about SWAN UK during one of our genetic appointments. It took me months before I eventually signed up. I am glad we did. We haven’t been members long but have been to two meet- ups and met some other likeminded people, which is difficult when you have a child like Juliette. We even came home to some balloons from SWAN UK one day and a note to tell Juliette she is awesome!

Without a diagnosis you can feel a little lost, like there is nowhere you belong, but SWAN UK gives you somewhere to go.

Even though all the children are completely different, all of us as parents have something in common. Chances are someone will have some experience with a certain type of seizure, medication or paediatrician somewhere. I would encourage those who feel a little lost and alone to join the SWAN UK network and feel a sense of familiarity with others going through the same rubbish as them. None of our children asked for this to happen to them, and sometimes it’s hard to accept that, but knowing there are thousands of others out there makes it a little comforting somehow, that you are not alone.

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