A mum from Mexborough, Doncaster has shared her experience with baby loss, wanting to open up conversations to encourage others to not suffer in silence as Baby Loss Awareness Weeks draws to an end.
9-15th October 2023 marks Baby Loss Awareness Week, a national campaign week set up to attempt to change the way baby loss is handled, and to remember the young children who are no longer with us.
Dee Perry-Humphrys, 26, experienced her first miscarriage in May 2019 at seven weeks, just three days after she and her husband, Nick Humphrys, 32, found out they were expecting.
She started bleeding heavily and went to Doncaster Royal Infirmary, where a midwife confirmed she was losing the baby.
After being sent home, she miscarried on the toilet.
She said: “It was awful. It was a bit of a rollercoaster, to come to terms with the fact that I was pregnant and then a few days later realising that I wasn’t pregnant.
“I went straight back to work as if nothing had happened, like a lot of women do. A lot of women don’t feel like they can tell anyone because it’s not really spoken about.
“We keep it to ourselves, continue with our day-to-day lives. I used to say ‘oh, I’ve got extreme period cramps.”
Dee fell pregnant again in August 2019, developing a tiny bump, but at about 11 weeks, she started cramping and bleeding heavily and was eventually admitted to hospital.
She said: “I actually got maternity clothes, because my skinny jeans no longer fit.
“I was waiting for hours in the waiting room, still bleeding, and then I got put into a ward.
“Me and Nick knew that wasn’t good.”
An internal scan revealed a heartbeat which doctors estimated to be five weeks old, much smaller than they expected, and the couple were told it was unlikely the pregnancy would carry to term.
Dee was sent home and told to come back if she lost the pregnancy so doctors could perform tests to find out why it was underdeveloped.
At 11.30pm Dee lost not one baby, but two, miscarrying twins in the bath.
After testing in December 2019, the couple discovered the babies had both developed Patau’s Syndrome and Turner’s Syndrome.
Turner Syndrome occurs only in baby girls, when they are missing one or part of an X chromosome, causing a variety of symptoms such as developmental issues post-birth.
Patau’s syndrome is a rare genetic disorder caused by having an extra chromosome 13, severely disrupting normal development and, in many cases, resulting in miscarriage or the baby dying shortly after birth.
They were told their pregnancy struggles were likely due to Dee’s Polycystic Ovary Syndrome (PCOS) causing a lack of progesterone production, a hormone which is vital to keeping viable pregnancies.
Dee was diagnosed with clinical depression after the loss and struggled to go about her day to day life, saying, “I couldn’t face the public. I couldn’t face going outside. I couldn’t face anyone.
“Nick’s way of coping was overworking himself. He went the complete opposite direction. I just wanted to stay in bed and curl into a ball whilst he was out doing things.”
Because of the hospital testing, Dee and Nick were able to attend a NHS-funded funeral for their girls in January 2020, as well as for other babies who had not survived pregnancy but underwent testing.
The couple shared that it was at the funeral, when they were sitting at Rose Hill Crematorium, Doncaster, they realised they weren’t alone.
Dee said: “You don’t know that until it happens to you and you look around and see the amount of people that have gone through it, at the same time.
“All the babies that were cremated then were more or less lost from when I lost the twins to January.”
However, just under a year later, Dee fell pregnant again, something she never thought she would experience naturally, and the couple welcomed their rainbow baby boy, Xavier Perry-Humphrys on 17th September 2021.
They say Xavier’s sisters are a big part of his life, adding them to the bottom of his birthday cards and leaving presents for him from them under the Christmas tree.
Dee said: “When he goes through milestones, be it from taking his first steps to his first ever haircut, Nick and I still cry because they are his firsts but we’re meant to have three other children too.
“That grief never leaves you. You just learn to live with it. That’s the truth of it.
“It’s part of us now. When people say ‘I’m so sorry’, I’m like ‘don’t be’, because it’s what turned me into the person I am today.”
Her message to others who have gone through similar experiences is to start talking.
She said: “Don’t be scared to ask for help. Don’t be embarrassed, and also something I wish I knew, which I only knew recently, is say your babies names.
“If anyone asks you if you are a parent after losing children, you are a parent. You may not have living children who walk among us, but you do have children. Don’t be scared to talk about it or mention them.”
As well as encouraging more open conversations about baby loss, Dee wishes miscarriages were spoken about in sex ed classes, just as making babies and giving birth is.
She said: “1 in 4 pregnancies result in loss and you don’t know that figure until you go through it yourself.
“It’s something that’s taboo which shouldn’t be taboo. You shouldn’t have to go through that trauma to then get all the info.”
Dee and Nick have just celebrated Xavier’s second birthday, and say their babies, Angel, Haven and Halo are always in their hearts.
For more information about Baby Loss awareness week, visit https://babyloss-awareness.org/.
For support and resources about dealing with child loss, you can visit https://www.sands.org.uk/ or contact them on 0808 164 3332.