So, I was 18 when I found out that I was pregnant with Penelope. I suppose at that time I thought
I was quite grown up and really prepared to have a baby and it was quite an enjoyable pregnancy
until my 20-week scan, when they found out that Penelope had Choroid plexus cysts on her brain.
And we were told that it could possibly mean that she has Edwards' syndrome but because
I was so young and because, it was, there was no other markers for Edwards' syndrome
they said it was very unlikely that it would be it.
Penelope was born with Edwards' syndrome, also known as trisomy 18, which is a rare but serious condition.
Most babies with Edwards' syndrome die before or shortly after being born.
So, Penelope's birth was really, really traumatic, with me being so young, as well, I think
it was really scary. Obviously never been through labour or birth before, so my waters broke
the day after my due date. I was in labour for 30 hours and I had to be accelerated
because I wasn't progressing enough myself. My mum and my husband were with me the whole time
and all of a sudden then she was born. She came out, she wasn't breathing and they took her
away, they brought in a load of doctors, they took her away to the other side of the room and tried
to resuscitate her, which I'm glad now I didn't have the Amnio to confirm the diagnosis because
they wouldn't have done that otherwise. They passed her over to me for a couple of
minutes just to see her before they rushed her away to the neonatal intensive care unit.
I wasn't able to see her for about four or five hours after the birth and a consultant came
and spoke to me and my husband and told us after her physical examination what they had found
and that they suspected Edwards' syndrome and wanted me to give my consent so that they could
do genetic testing, just to confirm.
Life with Penelope was quite difficult. A new baby already
changes the dynamic of any relationship, never mind a baby with complex needs.
We still had all the normal baby stuff, we had the crying, the colic, the teething, the sleepless nights
and the only real different thing at that stage was that she was tube-fed. We had lots and lots
and lots of appointments from the very beginning of Penelope's life, every single week we would
have different health professionals coming into the house to check on her and sometimes it felt
like our house was more of a hospital than a home because we had so much medical equipment
and so many different nurses and physiotherapists and everything else, coming in to help care for her.
Penelope absolutely loved life. She had the most mischievous little smile.
She loved being the centre of attention and if she wasn't, she made sure that you knew about it.
She loved me and she loved her daddy, she loved any form of interaction from us. She loved her dog, Francis,
and she used to laugh at him, every single day. She loved lights because she was deaf.
She gravitated so much more towards the lights and we decided to start building up our own little
sensory room of lights for her in the house. She loved how, she loved swimming, so we took her
to the hydrotherapy pool as much as we could. She loved a bouncy chair that her granny got her and
she soon worked out how to make the toys move, by themselves and she just absolutely loved it.
So, Penelope took really sick at the start of December. She had a chest infection but, we,
she hadn't been to hospital for a year. I had dry antibiotics in the house so I made her one up
and started her own course of them and to be honest we didn't really think she was that sick
I mean our oxygen saturations were keeping quite high on quite a low amount of oxygen
but all of a sudden on the 2nd of December she just crashed at home.
Her saturations plummeted, her body started to reject food and water.
So we rushed her up to the hospital because I couldn't provide her any more oxygen at home and
there was nothing else I could do for her at home and so we were in A&E and just before she got moved
to the ward, her saturations dipped severely. She was really struggling to breathe by herself
and loads of doctors flooded in. They wanted just to take her to a side room and let her pass away,
they didn't want to even try and treat her but I fought and they took her up to the
pediatric intensive care unit and she seemed to settle for a bit and the next day, then,
I don't know what happened, she just completely crashed.
Penelope passed away peacefully on 03/12/2017 at the age of 2 surrounded by her family.
I don't know how me and my husband survived it at all. It really nearly did break us, it was very hard,
we were having a lot of arguments, we were both grieving in very different ways
and we were both really, really, really angry. We weren't angry at each other but we were angry at the world
and what it had threw at us and why it was us that had to lose a child
because you never think it's going to happen to you, ever. I suppose what I find helpful was
finding other people who have been through it because nobody understands until you've
been through it and you don't want anybody to experience it but having somebody to talk to that
knows how you're feeling, exactly, was the most precious thing ever to me
because I felt like I could open up and be myself around them
even if i did have to put on a big-bird face to everybody else.
Take the time that you need to do your research find other families who have been through it
and who have living kids or had children with Edwards' syndrome,
who lived for quite a while and just see what the best thing is for you to do.
The most important thing is that you do what is right for you and for your family and you
shouldn't feel forced or pushed into any decision from anybody. Also Soft UK (soft.org.uk) is
a charity for people who, and families who are affected by trisomy 13 and trisomy 18 and I actually volunteer
with them. I am a peer support volunteer and we offer a helpline that families of any description
mum, dad, sisters, brothers, grannies, who can ring and speak to us and have somebody there to listen.
Since Penelope passed away we have had two more kids. Stella who is 3 and Elsie who's 1
and they brought so much light, during such a dark and painful time they are the reason I get up
every single morning and Stella is at an age now that she can say Penelope and she started drawing
family pictures, of all of us, which she includes Penelope in and that is so special to us because
we want them to know how amazing their big sister was and how amazing she did.
We celebrate Penelope's birthday every single year as if she was still here, we buy a birthday cake
and we blow out candles and we visit her grave and put balloons up and put new flowers out.
It's really important for me that nobody forgets Penelope because she made such an impact on so
many people and I will continue to talk about her to everybody. I always tell people I have
3 kids, if they ask, I'll never say I have 2 because she still was here, she still was alive,
whether she is here now or not. If I was to find out I was pregnant again and that was the same
situation, I would go through it all a hundred times just for the time that we had with Penelope.
The symptoms, and how seriously your baby is affected, usually depend on whether they have full, mosaic, or partial Edwards' syndrome.
Penelope may have died but she also lived and they are both as equally important to acknowledge.
Find out more at nhs.uk/conditions/edwards-syndrome