Dear parent, or parent to be,
We guess that if you are reading this it is because you have been told that your baby may have Edward’s syndrome which has been discovered either before or after their birth. If this is the case, our heartfelt empathy goes out to you; just over four years ago that was us and we can still clearly remember just how desperately painful it is to receive such devastating news.
We are writing this, however, not to dwell on the bad parts of this but to let you know about our experience in the hope that this provides some balance and maybe even a little hope.
Just over four years our daughter Isabel was born. It had been a really easy pregnancy for most of the time, with nothing untoward picked up in any scans. There had been a query about whether the baby’s oesophagus was fully formed as Alison had high levels of fluid, but no suspicion of anything else wrong. In many ways we were lucky as we didn’t have any difficult decisions to think about, but it also meant it was a huge shock as Isabel was clearly quite poorly when she was born. As she was small and quite floppy the medical team felt she ought to be tested genetically, but we were not aware until much later what she was being tested for. We were transferred up to the regional neonatal intensive care unit nearly 2 hours away as this is where we needed to go for the surgery she needed.
At three days old we received the dreadful news that she had Edward’s syndrome, and that she would survive for days or weeks at best. We were given the choice about whether to proceed with life saving surgery. We totally loved her even at this early point, and it was clear that she was alert and not in any great pain – she was also breathing without help, and we knew immediately that we had to give this tough little girl every chance to have a life, however short it might be.
Fast forward four years and Isabel is very much enjoying that life, and is a loving, happy, beautiful and loved little girl with a shining personality. She clearly knows and loves her family, and can communicate pretty well all her wishes even though she can’t yet talk. We have learned to focus so much more on what Isabel can do than what she can’t. She is very smiley, and laughs out loud, and has the cheekiest coy look when she knows she is getting your full attention. Her smile lights up her face, and the whole room. She studies everyone carefully with her big blue eyes, and clearly recognises her mummy, daddy and older brother – she views anyone else with suspicion until she gets to know them. She is very definitely a Daddy’s girl, and also adores her big brother, and either of them will cheer her up just by arriving. She is very cuddly, and loves a cuddle most of the time, though will make it clear when she wants to be put down again.
She has 3 bottle feeds a day and 3 meals, all orally fed. She has distinct preferences for sweet food, so we get through a lot of custard, and she will refuse to eat anything of the wrong taste. We tend to mix baby rice/cereal with her food to get her used to lumpy food, which she manages pretty well. She particularly loves ice cream, and you can never get away with eating one in front of her and not giving her some! She drinks from a standard baby beaker but would prefer juice, thank you very much, so don’t think you can sneak any water in!
Isabel has delayed development, but it is delayed not stopped – she is making progress at her own pace. We have started doing a programme organised through the Brainwave centre, which is a series of daily exercises and Isabel is doing really well – she can sit unsupported for a minute or so which gives us great hope that one day she will be able to sit unsupported. She now has good head control, and we do standing exercises with her most days to develop her strength.
We are very lucky in that Isabel doesn’t need any specialist care – if you can look after a 6-12 month old baby then you can look after Isabel. She is generally a good sleeper at night, but is a pickle about going to bed. She usually manages a crafty nap either during the school run or around tea time and that is enough to keep her going until 10pm or later. Once asleep she sleeps soundly and usually has to be woken up in time to have her bottle before the school run – we always say she has a teenage sleep pattern, as she will then have a good nap in the morning.
In many ways we have a normal life punctuated by hospital trips. We both work (Alison part time) thanks to a wonderful childminder and some great friends and family who have stepped in if we need a plan B. We have been away – to Guernsey (several times) and Menorca (every year), as well as to Legoland and to visit friends and relatives, and when Isabel was one and a half we had an amazing and magical holiday in Disneyland Paris. So amazing in fact that we have been again twice!
We are so lucky that Isabel has been in great health for all our holidays – it’s almost as if she knows. We are obviously careful about taking her out if it’s really cold, and we tend to avoid anyone with a known heavy cold, but apart from that try and live our life as normally as possible most of the time.
It’s not been easy or plain sailing. We have had some very scary moments where we thought we might lose her, and there have been times when we see a “normal” child of her age and can’t help feeling a little wistful. We have also had to fight Isabel’s corner at times, and on at least two occasions our actions have saved her life – that’s a huge responsibility. There have been times we have worried about what Isabel will and won’t be able to do as she gets older, and what the future will be like, but there is so much that is unknown that in the end we just keep trucking on taking each day as it comes.
Isabel has brought profound joy and love into our lives, and she has touched so many people in so many ways. She is a delight and a joy to have in our lives, and what we have come to realise is that whilst we don’t know what the future holds, we never really did anyway. Besides, she has done so much more than anyone led us to ever believe that we never say never in our house now.
When we were given Isabel’s diagnosis we were given no hope at all. Nobody told us that a very small number of children do better than expected and live much longer than anyone thought they would. We have found anecdotal stories of children in their teens, and a few who have lived into their twenties and thirties. We know that these are the rare exception, but knowing that just now and then there is a rare exception is a hugely different situation to being given no hope at all.
We hope that this letter provides a small glimmer of hope that enables you to keep going through the dark days. We know that our story doesn’t guarantee how things will work out for anyone else at all, but we also know that you will have been told all the bad things and probably not about stories like Isabel’s.
The other thing that we have discovered is that we are much stronger than we ever thought possible, and we have coped with far more than we would ever believed we could before Isabel came into our lives. This strength wasn’t all there at the start – it has come day by day. If we had known about Isabel before she was born we would probably have thought that we couldn’t cope, and that we wouldn’t want a child with difficulties in our family. Now we can’t imagine not having our lovely girl in our lives with her cheeky grin and knowing eyes.
When we were discharged from the regional NICU the only conversations were about palliative care, and we were given the number of the children’s hospice. We had no idea what the future would hold, and were trying to cling desperately to any tiny bits of hope that we could find. Whilst we were up there we received lots of new baby cards, one of which just happened to have a passage on the back that resonated completely with what we needed to hear. It is a clever argument as to why it is perfectly logical to believe in miracles despite what anyone might say, and it gave us the strength to keep going and to keep hoping for a miracle, and that pretty well feels like what has happened so far.
From The Water Babies by Charles Kingsley
“But there are no such things as water babies”
How do you know that?
Have you ever been there to see?
And if you had been there to see, and had seen none, that would not prove that there was none…
And no one has a right to say no water babies exist til they have seen no water babies existing; which is quite a different thing, mind, from not seeing water babies;
And a thing which nobody ever did, or perhaps will ever do.
We wish you every bit of luck and strength for whatever you may have to deal with, and hope that you too have a water baby to love in your life.
From Isabel’s lucky parents,
Alison and Bill