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Mothers with cystic fibrosis: ‘We’ve lives we never thought we could as no one thought we’d still be alive’

The introduction of highly effective medicines has allowed some people to fulfil their desire to have children

Cathy Coleman and her children Luke (three months) and Syve (2½) in her home in Co Monaghan. Photograph: Alan Betson

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Sylvia Thompson
Thu Apr 11 2024 - 05:31

Cystic fibrosis (CF) was once considered to be a young person’s disease, as many of those born with this rare genetic condition – which affects the lungs, pancreas and other organs – didn’t live into adulthood.

However, in recent years, the introduction of better treatments and highly-effective medicines has transformed people’s lives. Access to specialised multidisciplinary CF inpatient and outpatient centres, together with drugs such as Kalydeco, Orkambi, Symkevi and Kaftrio, have given many people with CF a better quality of life and increased longevity.

This has led some people to fulfil their desire to have children.

Cystic Fibrosis Ireland offers a fertility grant to men and women with CF who require assisted fertility treatments, such as in vitro fertilisation (IVF), sperm retrieval, egg freezing or surrogacy. The grant is provided on a case-by-case basis to people with CF or their respective partner who don’t qualify for the new HSE-funded public fertility scheme for fertility assessments and assisted reproductive procedures and technologies.

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[ Explainer: What is cystic fibrosis and what does the future hold with improving treatments? ]

Here, we speak to three women with CF about their journey to parenthood.

Sasha Delaney, mother of Daithí (2½) and Siobhán (18 months)

The 39-year-old, who was diagnosed with CF at six weeks old, grew up the eldest of three children in Dublin. “It was just something else I had to deal with,” she recalls. “My parents never held me back. I ran every race in school even if I always came last.”

However, she was very sick throughout her teens and spent a lot of time in hospital. “I sat my Leaving Certificate with pleurisy on both lungs, even though I thought I had sprained an inter-costal muscle.”

Sasha continued to be unwell throughout her 20s and says she “celebrated her 30th birthday like it was my 100th”. But, in her mid-30s, following a move to Naas, Co Kildare, with her partner, David, she started on Kaftrio and her lung function improved enormously. “Within a week of going on the drug, I was sleeping all night – rather than getting up three or four times to take inhalers. One month later, I started a couch-to-5km training programme.”

At the age of 37, she became pregnant with her son Daithí. “I hadn’t done any fertility tests and I didn’t want any medical intervention. So, it was a very nice surprise.”

Although there is very little research into the effects of Kaftrio during pregnancy, Sasha decided not to stop her medication. “I felt that Kaftrio had got my body strong so I didn’t want to stop taking it while growing another human being,” she explains.

After her son was born, Sasha settled into parenthood with support from her partner (who works from home) and extended family. “Before having a baby, taking my medication and doing my physiotherapy was second nature to me, but, with a new baby, I had to consciously fit it all in,” she says.

Within less than a year, she was pregnant again. “I ended up in hospital for six weeks during my second pregnancy with pneumonia in both my lungs. In a way, the drug was working so well, I kind of forgot that I had CF, but two pregnancies so close together left me a bit run down.”

Her daughter Siobhán was born at 35 weeks and within 11 weeks, she was sleeping through the night. “I’m lucky in that I have two good sleepers,” says Sasha, who is part of the Cystic Fibrosis Ireland online Pregnancy Support and Advocacy Group.

Describing her life with two young children, she says, “I’m home all the time now and David is very hands-on. It was tricky at the start, but once I got a good routine going, I managed.”

Reflecting on parenthood, she says: “As people with CF get older, we are having lives that we never thought we could have because no one thought that we’d still be alive.”

Joy O’Brien, mother of John (4) and Rose (18 months)

“I was diagnosed with CF shortly after birth because my parents had two other children with CF – one who died at four days old and another who passed away at 6½ years,” explains Joy. “I was pretty healthy as a child, even if I was thin and malnourished looking. My mum wrapped me up in cotton wool and I missed a lot of school due to chest infections.”

As she got older, the now 46-year-old says that her CF got worse with the demands of commuting from Rush, Co Dublin, to art college in Dublin. “I needed hospitalisation in my 20s and 30s and I had a poor quality of life then. I was sick and tired of being sick and tired.”

In 2016, six years after getting married, Joy gave up teaching art to prepare herself for a double lung transplant in the Mater hospital. “Having a baby was ruled out. I was told if I went ahead without help, the baby and I would die. And if I worked alongside the medical team, I could have a baby, but would only live for a year afterwards.”

So, Joy and her husband Shane got a dog instead and put the idea of becoming parents out of their minds.

However, as she recovered from her double lung transplant, Shane began researching the possibility of surrogacy. Without telling family and friends, they went to a clinic in Ukraine to find a surrogate to carry their baby following IVF. Back in Ireland receiving regular updates from the clinic in Kyiv, the couple returned to Ukraine two weeks before the birth of their son, John. “We stayed a month there to get all the documents in order. It was very exciting. It was so wonderful when we got home. I felt so proud pushing him around in a pram. People in the town were so happy for us,” explains Joy.

[ Orla Tinsley: I’d like to be telling you about my dream life, but here’s a nightmare from Ireland’s health system instead ]

About two years later, the couple returned to Ukraine to do another embryo transfer with a different woman who was willing to act as a surrogate. But, 12 weeks into the pregnancy, the war broke out in Ukraine. “We were worried sick about our surrogate because she had dreadful morning sickness and she had to spend days on end in a bunker,” explains Joy. One month later, their Ukrainian surrogate, Nathalie, agreed to come with her son to live in Rush until the baby was born.

The experience second time round was completely different for Joy and Shane. “I went to all the hospital visits with her using Google translate. I went through all the motions as I was having the baby and we were with her when Rose was born.”

Nathalie returned to Ukraine with her son a few weeks later, but then came back to Ireland as a war refugee and is now living in a different part of Ireland.

Reflecting back on her journey to parenthood, Joy says, “it’s the road I took. I never thought that I’d have children. It’s hard juggling hospital appointments for myself with looking after two young children. But I’m really proud of myself to have got this far.”

Cathy Coleman, mother of Syve (2½) and Luke (three months)

Cathy Coleman (28), who was diagnosed with CF soon after birth, says she had a relatively healthy childhood growing up in Monaghan. “I went to Crumlin hospital every three months for a check-up, but I didn’t have any hospital admissions until I was 15,” explains Coleman who is the middle daughter of three, all of whom were diagnosed with CF. Her younger sister died 10 years ago.

Cathy Coleman and her children, Syve and Luke. Photograph: Alan Betson

Following her years in Dublin studying art and design and then throughout her early 20s, Cathy explains she was in hospital every six or seven months for a course of intravenous antibiotics to treat infections. Treatment with new CF drugs, Orkambi and then Symkevi, didn’t improve her condition, but when she started on Kaftrio three years ago, her lung function began to improve significantly.

Following college, Cathy returned to Monaghan where she lives with Matthew, her partner of 10 years. “We both wanted to have children, but I thought I’d have difficulty getting pregnant so we were never really careful,” explains Cathy. She was on Kaftrio six weeks when she discovered that she was four weeks pregnant. “I had a great pregnancy and a normal birth.” She said there was “constant worry” about the baby because “the drug is so new and there is so little research into women taking it during pregnancy”.

Syve was born in September 2021 and Cathy says that because of Covid restrictions, the family wasn’t mixing with people, which protected her from picking up infections.

“I was healthier during Covid than I was during my whole life,” she reflects. She discovered she was pregnant with Luke when she was in hospital seeking treatment for a cold she couldn’t shift. “I ended up being in hospital for five weeks because they couldn’t give me strong antibiotics when they discovered I was pregnant. The rest of my pregnancy went well and I haven’t been admitted to hospital for treatment since he was born.”

Cathy breastfed both her babies for about a month before she was recommended to stop so as not to put her body under too much pressure. “Not many women with CF breastfeed so I was happy to do it for a few weeks,” she adds.

65 Roses Day (named for how a child might say cystic fibrosis) is Cystic Fibrosis Ireland’s annual fundraising day and takes place on Friday, April 12th. Like Sasha, Cathy also finds being part of Cystic Fibrosis Ireland monthly online Pregnancy and Advocacy Group to be very supportive. “It’s lovely to talk to other women with CF who are mothers.”

Working as a self-employed cake decorator gives Cathy flexibility to spend time with her children. “There is always a worry when I have to go into hospital – which happened twice when Syve was younger – as it puts a lot of pressure on Matthew and my parents.”

But that aside, she says that she loves being a mother. “I love staying at home. I love being with them for bedtime and booktime. I’m so proud of my children.”

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