They say that a boy’s first love is his mum. Uplifted shares the story of a bond between a mother and son in more ways than one.
Meet Rachel, mum to seven-year-old Jake. Both Rachel and Jake have Hirschsprung’s disease. Until Uplifted Magazine had met this lovely lady, it was not a medical condition that the team had ever heard of. We don’t think we are alone.
From the moment our interview began, Rachel’s happy-go- lucky approach was infectious. Her soft voice, oozed with a kindness. Despite all that she goes through, she remains so positive. The single mum of one allowed Uplifted Magazine full access to her reality. She has lived for as long as she can remember with this rare condition. She also became the one in ten statistic of passing the disease on to her little boy. Rachel shares her highs and lows of living with Hirschsprung’s and caring for her son with the same condition.
What is Hirschsprung’s Disease?
Hirschsprung’s Disease is a rare congenital condition -The nerve cells are non- functioning in the large intestine and unable to move stools along normally so that a baby cannot pass meconium. This causes a blockage. Without quick medical intervention this can lead to a life- threatening infection. Surgeries to treat this condition do not come without risk. In most cases, the bowel is diverted outside of the tummy to create a stoma. The patient then wears a colostomy bag that collects fecal matter.
In Rachel’s case, all of her large intestine as well as part of her small were non-functioning and her parents had no other options. She had to have stoma surgery within a week of being born.
Rachel’s Stoma Surgeries
Uplifted Magazine has featured many stories about women who have stoma bags linked to their medical conditions. However, Rachel’s stoma surgery experiences have been gruelling. The former DT teacher has learned to smile and joke through these hardships as she explains her surgeries to date:
“It’s complicated! At the age of two I had my stoma reversed but it caused so many problems for me, the final nail in the coffin came before getting pregnant. I was told that it could have caused me to be very poorly after having Jake so I decided to have stoma surgery. I then had to have my stoma re- fashioned, because the surgeries from being a kid left everything in a bit of a mess. It’s technically my third stoma!”
“If anyone tries to take this stoma off me – I’ll fight them. I’m much happier and healthier with my stoma.”
Rachel confidently jumps up and giving me a full view from top to toe, she says:
“To look at me you wouldn’t even know I have a stoma. Would you?”
Accepting her condition has enabled Rachel to come full circle. Reflecting back on the past isn’t easy for her. There was a time when she couldn’t casually talk about it and she didn’t have the self- confidence to accept her body for what it is. Secondary school was a particularly challenging time for her. Illness dominated her most of the time and she simply didn’t feel comfortable in herself. Forming solid friendships didn’t happen until her late teens. Sadly, it left her in a situation where she felt very isolated.
Having a baby
There was always a risk that Rachel could pass on her condition to her children. Having children was a natural progression for her and her husband. The statistics showed that there was a one in ten chance. When she found out she was pregnant, there was an option to have genetic testing to confirm whether her unborn child had Hirschsprung’s. Rachel opted not to do this after learning that it could have caused a miscarriage. She proceeded on with her pregnancy. As challenging as it was, her mindset was that she should assume the baby would be born with the condition.
“I mentally prepared myself throughout my pregnancy that my baby would have it.”
Every mother- to- be dreams of that moment when they cradle their baby for the first time and the relief that comes when everything is well. After a tough C-Section, Rachel held her baby boy. Learning that he had Hirschsprung’s was a bittersweet emotion. Her tiny baby needed stoma surgery. Just like his mum, Jake’s large intestine was completely affected as well as part of his small.
Prior to surgery, little Jake had to have multiple ‘washouts’ every day to clear his system. A process Rachel describes as simply “horrendous” for her baby.
“I am 200% in with anything medical, I’m not squeamish but I had the guilt that I had passed the condition on to my baby, also the hormones because you’ve just had a baby. Then you have to listen to your new-born struggling. It was the one thing I had to hand over and say – Ok I can’t deal with this. That was hard.”
Reflecting back to Rachel’s mother
When Rachel reflects, she is not quite sure how her own mother managed to cope. Although she was a first time mum, she understood Hirschsprung’s whereas her own mum wouldn’t have known what to expect. Times were different then too.
“My mum, love her didn’t have social media to try and connect with other parents. She didn’t have a mobile phone to contact friends and family when she needed support and my dad worked nights managing his bakery business. Technology does make things easier to deal with. I’m not sure how she did it.”
As Jake is growing, he is more aware of being ‘different’. Rachel does her best to keep dialogue open with him. He is not a fan of his colostomy bag and he now asks questions about why he has to have one. The lovely people at Pelican Healthcare, who design and produce colostomy bags, reached out to Rachel. They invited the mother and son along for a day trip. Jake was allowed to design and make his own colostomy bag.
“It was absolutely incredible. They are just so lovely at Pelican. They really are genuine, lovely people. They have family values at their core. Jake’s eyes lit up. He just loved it.”
Rachel is determined to support Jake at every turn. Through her Instagram page she has connected with male friends who wear colostomy bags. Showing Jake their pictures is teaching him that there are lots of other boys and men that are like him.
“I want Jake to grow up and think yeah I’m different but it makes me unique.”
In May, Jake will have stoma reversal surgery at Great Ormond Street Hospital in London . Rachel’s hope is that it will be a successful outcome – albeit a long road in terms of understanding if it has worked properly for him. The pair, as always will be together through it all.
Rachel’s many ‘hats’
This Gutsy Mum is driven by an unwavering spirit to be at her son’s side. Raising awareness for Hirschsprung’s sufferers is her passion. She is also one of the faces for Pelican Health – good work Pelican! Charity runs and marathons are targets she sets herself to raise money for her local children’s hospital, Noah’s Ark in Cardiff. Jake has been an in- patient many times over the years with various complications relating to his condition. She is now a Family Ambassador for the hospital. What a fabulous accolade. Hirschsprung’s won’t get the better of this lady.
This determined Welsh warrior doesn’t let her circumstances deter her from sharing her ‘ups and downs’- her Instagram @gutsy.mum allows her followers to see her real world. Initially, she joined Instagram and started her page for parents of children with ostomies in mind. It was a massive coping mechanism for Rachel in the early years of caring for Jake. Organically her posts are now more geared towards herself and she is a true inspiration to her 3,500 strong followers.
“As long as I have followers, I will keep sharing.” She says.
“This is our normal – you just have to go all in with this life and accept it for what it is. I can’t think negatively – I think positively. Even on the bad days you just have to keep pushing on.”
Uplifted Magazine champions this wonderful lady’s outlook. We wish Rachel a very Happy Mother’s Day. We also wish Jake the very best with his upcoming surgery and will keep following Rachel’s page for updates.
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