Saturday 22 July 2017

My miracle baby Georgie survived open heart surgery just one day after he was born

When Georgie Scott was born six years ago, his parents knew he had a serious heart condition. His mother, Gillian, tells Joy Orpen about some terrifying moments as doctors struggled valiantly to save her precious baby

Gillian Nevin with her son, Georgie. Photo: Steve Humphries
Gillian Nevin with her son, Georgie. Photo: Steve Humphries

When Gillian Nevin went for her 20-week pregnancy check-up, she was looking forward to coming home with a "pretty" picture, captured from the scan of her unborn infant. What she got instead, at the National Maternity Hospital in Holles Street, was the unfolding of her worst nightmare.

"As the scan seemed to be taking a long time, I asked the sonographer if there was anything wrong," Gillian explains, "and she said yes, there was a problem. I got such a shock, I started bawling." And so began an epic journey for this Wicklow-based family.

As luck would have it, that day cardiologist Professor Colin McMahon from Our Lady's Children's Hospital, Crumlin, was at Holles Street for his usual weekly meeting. Having examined the scans, he confirmed that Gillian and her husband Eric's unborn baby was suffering from hypoplastic left heart syndrome (HLHS). In other words, the left side of his heart was not developing normally.

"He explained that a congenital defect often comes hand-in hand with another syndrome - for example, Down syndrome. We'd only been married for five months and this was our first child. It was absolutely devastating," says Gillian.

As time went on, subsequent scans revealed the baby was also suffering from transposition of the great arteries. This meant that the main vessels of the heart were not connected properly. Instead of oxygen-rich blood nurturing the baby's body, he would receive blood that was deficient in oxygen.

And if all that wasn't bad enough, it then transpired that the placenta was lying across the opening to Gillian's cervix (known as placenta praevia). The danger here was that she could haemorrhage at any time. And while most cases of placenta praevia resolve themselves in good time, some women will need a caesarean section to ensure a safe delivery.

Consequently, Gillian, who is a business development director for the hotel chain Hilton Worldwide, was warned off her weekly road trips to Belfast. But there was also some good news. The amniocentesis test revealed there were no additional syndromes involved.

Nonetheless, the baby still faced enormous challenges, including three specific surgical procedures to deal with the cardiac issues. In the meantime, Gillian took good care of her heath. She also had telephonic healing sessions and went to an acupuncturist in Portlaoise. "I had been a complete sceptic," she says. "But now I was grasping at straws."

In February 2011, Gillian was admitted to Holles St for a caesarean section. As there was a serious risk that she could haemorrhage during the birth, she was hooked up for blood transfusions, should they become necessary. When she woke from the anaesthetic, she was overjoyed to learn that her baby had survived. She was allowed to see him briefly, before he was whisked off to Crumlin in a cardiology ambulance, with his dad close behind.

The following morning, wheelchair-bound Gillian was taken to Crumlin, where she held her miracle baby for a precious few minutes. But that night, back at Holles St, she was distraught. "I was on morphine; it was getting dark and I was all alone. I will never forget the overwhelming sadness I felt," she says. The next day, Georgie had his first open-heart surgery, lasting five hours. After two weeks, he was able to go home. He needed 16 medicines every day. "He was never well, and he cried all the time," Gillian recalls. "Then he would go purple, because he lacked oxygen. They warned us he could have an acute shut-down at any time. Eric used to watch Georgie until 3am, and then I would take over. I took a photo of him every day, in case it was his last. It was all so frightening and so terribly stressful."

In his fourth month, more open-heart surgery was performed. This time, a Glenn procedure was done to resolve some of the valve problems. It also paved the way for the final procedure in the three-pronged remedial process. Unfortunately, Georgie suffered a cardiac arrest during the seven-hour operation. It took the medical team three critical minutes to get him breathing again. After the operation, Gillian and Eric were taken to intensive care to see Georgie, but they didn't even recognise him.

"He was so bloated and swollen," Gillian recalls. "One lung would collapse, then the other. He spent 13 days on a ventilator and, as he was not getting any better, we had him baptised by our friend Rev Fred Appelbe from Rathmichael parish. I had almost given up at that stage, but the very next day, Georgie turned a corner and started to get better." The baby remained in hospital for two months.

The following year, Georgie had two keyhole surgeries. Then, when he was two-and-a-half, he had his third open-heart surgery, lasting six hours. Following the operation, the little boy's heart kept oozing blood. "I reverted to rocking, chanting, praying and watching the numbers on the monitor," says Gillian. Fortunately, the crisis was short-lived, and even though he developed MRSA, just three weeks later, Georgie was back home again.

During the course of the second operation, Gillian and Eric joined Heart Children Ireland (HCI), a support group for families of children with congenital heart disease. "Back then, we were clinging to the edge of a cliff by our fingernails," says Gillian. "But Dr Deirdre O'Neill, a clinical psychologist with HCI, listened to us at a time when we couldn't bear to speak to anyone else. And she coached me in breathing and relaxation techniques. She was also invaluable when Georgie had his third open-heart surgery. She gave us excellent advice on how to prepare a two-year-old for this traumatic ordeal."

Gillian believes that her son's medical experiences have left deep, long-term emotional scars. "He has terrible nightmares and he is wary of grown-ups," she says. But she finds comfort in knowing that HCI will do much to help her, and especially her beloved Georgie, in the years to come. Apart from the counselling and support services, HCI organises social events for members, and raises funds for equipment, crucial for the cardiac unit at Crumlin.

Right now, Georgie is happily ensconced in his junior infants class, although he cannot join in all the games. He remains the apple of his mother's eye. "He is so incredibly special," she says. "I feel so connected to him."

For more information, contact Heart Children Ireland, tel: (1850) 217-017, or see heartchildren.ie

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