Monday 23 October 2017

Battles for babies - The miracle Irish family with two sets of twins born prematurely

Susie and George Robinson have two sets of twins who were born prematurely. They tell our reporter about the enormous challenges they have faced in getting these once tiny, frail babies to grow and thrive

George and Susie Robinson with their children, from left, Charlie (two), Alex (one), Mia (one) and Kyle (two). Photo: Tony Gavin.
George and Susie Robinson with their children, from left, Charlie (two), Alex (one), Mia (one) and Kyle (two). Photo: Tony Gavin.

Joy Orpen

Just over a year ago, Susie and George Robinson's four children were all under the age of 19 months. And if that wasn't challenging enough, two of them were quite frail and sick.

That they were born at all, is something of a miracle, as Susie suffers from gynaecological problems. "I had grade-four endometriosis," she explains. "The worst kind. And that's why I found it hard to get pregnant." So the Robinsons, who are in their 30s, and live in Co Kildare, opted to undergo in vitro fertilisation (IVF). Eventually, they got the news that Susie was expecting twins. In March 2013, Kyle and Charlie had to be delivered eight weeks early, because Susie was suffering from pre-eclampsia, which caused her blood pressure to rise dramatically, putting her, and the babies, at risk. The boys weighed just over four pounds each, and had some breathing difficulties. But even so, they did so well, they were discharged three weeks later.

"That's when the fun really started," says Susie wryly. "As soon as we got home, Kyle started projectile vomiting. It got so violent he was in danger of aspirating [breathing it back in]." Eventually he ended up being manually ventilated in St Luke's General Hospital in Kilkenny. Nonetheless, he continued to deteriorate, so in the middle of the night, the critically-ill infant was rushed by ambulance, to Children's University Hospital, Temple Street. His distraught parents followed him to Dublin by car, not knowing if he would survive. At the hospital it was established that Kyle was suffering from aspiration pneumonia, which can occur when oral or gastric content enters the lungs.

Once he was reasonably stable, he was transferred back to St Luke's, where he was eventually diagnosed with pyloric stenosis, which causes the digestive muscles to thicken, preventing food from entering the small intestine. Kyle was then transferred to Our Lady's Children's Hospital, Crumlin, where the problem was resolved surgically. But the dramas were not over yet. At his six-week check-up, it was discovered that Kyle also had a hernia, and that had to be surgically repaired as well.

Then, a couple of weeks later, Susie and George noticed that a birthmark on Charlie's fontanelle (the soft spot on the head) had become raised and was growing at a rate that concerned them. So he was referred to a dermatologist at Crumlin, who diagnosed haemangioma.

Susie says this is a fairly common kind of birthmark, but because it was on Charlie's soft spot and at risk of bleeding, he needed to be medicated and monitored regularly, for the next nine months. "We were up and down to Dublin quite a lot," she says, underplaying the real story.

However, by the time the twins celebrated their first birthday, they were finally out of the woods.

Following this successful outcome, the Robinsons decided to have their remaining embryos, which had been kept frozen, implanted. "These two stuck like glue," says Susie, referring to Mia and Alex, who are now a year old. Their births were even more dramatic. "A scan at 26 weeks showed Alex had stopped growing," she explains. "That suggested pre-eclampsia, even though I had no other symptoms. So I was admitted to Holles Street [National Maternity Hospital] for bed rest to delay the birth, and given steroids to help the babies' lungs develop."

But soon after, the pre-eclampsia began to rage again, causing high blood pressure. So a C-section was performed at 29 weeks. Alex weighed two pounds, six ounces; Mia slightly more. "They were so tiny," Susie remembers. "Their skin was transparent and they had difficulty breathing. It was a really frightening time. We didn't know if they would make it. But, even though he had a hole in his heart, Alex did well, and came home after two months. However, Mia's lungs did not improve sufficiently, and she remained at Holles Street. So we had one baby in Dublin and three more down in Kildare. Mia still suffers from chronic lung disease."

On March 25 last year, Alex was admitted to Crumlin to have surgery to repair the hole in his heart. That day, Mia was transferred to Temple Street, to have extensive tests. It also happened to be Kyle and Charlie's second birthday.

"While Alex was under the knife in Crumlin, we flew across to Temple Street to be with Mia," says Susie. "Then we dashed back to Athy for the boys' birthday." About 10 days later, all four children were finally home together. But caring for them is a mammoth task. Mia requires constant medical monitoring; she has to be tube-fed, and requires oxygen on a regular basis. She remains prone to serious chest infections and pneumonia. Alex, who has the most wonderful smile imaginable, has needs like any one-year old, while the older twins - well, they're just two years old.

Fortunately, both sets of grandparents help with the children. From a financial point of view, it's also been tough. George, who is in sales and marketing, says they fought for months to get a medical card for Mia. "It cost €450 a month just for her feeding equipment and oxygen," he explains. "And we have been fighting to get ancillary care as well. Mia needs speech and language therapy [to help her suck and swallow] and physiotherapy for her lungs. We can get a small amount of services in Dublin, but what we really need is access to local services."

George says they also got help from the Irish Neonatal Health Alliance (INHA), which offers valuable support to premature babies and their families. "Our goal is to reduce the incidence of premature birth in Ireland, to support families with infants being cared for in neonatal intensive care units [NICU], and to improve the long-term health of premature babies, by ensuring optimum prevention, and the best treatment, care and support," says Mandy Daly, director of advocacy and policy-making for the INHA.

George has nothing but praise for the organisation. "Having a premature baby is a very daunting thing. In our case, it's been medical interventions every step of the way. So you need all the help you can get. We absolutely support the INHA."

As to Susie, he says, "She's been fantastic. It's her strength and knowledge that gets us through. It's due to her that the kids are doing so well." And he's not exaggerating - they are lovely children; each one with a very distinct personality and a happy self-confidence. There is clearly much love in this hectically busy household.

For more information on the Irish Neonatal Health Alliance, tel: (085) 192-0602, or see INHA.ie

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