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

Sunday Independent (Ireland) - Life - - HEALTH CASE STUDY -

When Gil­lian Nevin went for her 20-week preg­nancy checkup, 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, wheelchair­bound 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

Gil­lian Nevin with her son, Ge­orgie

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

‘I took a photo of him ev­ery day, in case it was his last. It was all so fright­en­ing and so ter­ri­bly stress­ful’

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