"We were told the baby's in a funny position, would we come back in a half an hour," Billy says. "We came back and the vibe in the room was a bit different. We were told 'we think your baby has an abnormality with its heart'. This was on a Tuesday and we were up in the Coombe seeing Dr Orla Franklin, who is a paediatric cardiologist, that Thursday."
The couple were told that their baby had a condition called tetralogy of fallot. “Totally fixable,” Billy explains, “but we’d need surgery within six months and maybe further down the line”.
Lanlih was monitored very closely for the remainder of her pregnancy. "We were up to Dublin every week. It was decided that the baby would be born in the Coombe because it was close to Crumlin in case there needed to be emergency surgery post-birth. We were really worried but they seemed reasonably positive about things."
“Emmeline was born on the 19th November. Out she came and she was taken away from us straight away. Emmeline was put straight into an incubator and there were tests done. The good news was that she didn’t have to be transferred and things seemed better than expected, so we were delighted.”
We were absolutely heartbroken. We didn't know what to do
Unfortunately, the couple’s joy was short-lived. Within 10 days Emmeline was transferred to Crumlin hospital. “They don’t mess around,” Billy explains. “It became clear to us, very quickly, that they weren’t happy and there was something else wrong. Within three weeks we were told that Emmeline didn’t have a long life expectancy and wasn’t expected to thrive. They couldn’t tell us why. We were absolutely heartbroken. We didn’t know what to do.”
Cuddled
Billy and Lanlih told their close friends and family of the situation and decided to try to live life as normally as possible. “My wife said that every baby deserved to be smiled at and cooed at and laughed at and cuddled and surrounded with happiness, so from that point forward when we were with Emmeline we just had such a good time.
“We made plans to get back home to Cork. We decided I was going to continue playing rugby. We weren’t going to say anything to anyone in the broader scheme of things. We were just going to try and continue on life as normal and live every day to its fullest with Emmeline. We started going out for walks.
“We went to every coffee shop in the Crumlin area. We got her to Lanlih’s sister’s house for Christmas Eve and Christmas Day and that was just the most special occasion because both our families were around.”
Staying positive wasn’t always easy and there were times Billy was hit by the enormity of it all. “Sometimes I’d have to pull over on the side of the motorway at 6:30 in the morning on my way to Limerick and I’d be bawling my eyes out,” he says. “I couldn’t see out the car window. Just not being able to fathom what was going on.”
In January, the family moved back to Cork. Billy and Lanlih were trained to take care of Emmeline’s medical needs from home and help from Jack and Jill meant the couple could get a full night’s sleep to be “full of energy, life and love during the day”.
Things continued to look up for the family when the results of Emmeline’s genetic testing came through and suggested that while Emmeline would have developmental delays, she could live a long life. “There was hope and it was a game changer. We could see a future. We were over the moon,” Billy explains.
“In early May she needed minor surgery on her heart. It was a surgical procedure and she took a general anaesthetic and she overcame that hurdle with flying colours. She recovered well from that and we were about to go home. We’d our bags packed. We weren’t even getting an ambulance home, we were driving home and she took a turn overnight.”
Ten days later, Emmeline died.
“I can’t put it into words, the feelings of loss, devastation and emptiness. It’s cruel. In the day or two after Emmeline passed away, we were surrounded by friends and family. You’re busy planning a funeral and it’s kind of surreal. We brought her home to our house in Cork and we didn’t leave her side. On the Monday morning, myself and my wife had to drive to the funeral directors and pick out a coffin or a casket, and then we had to go to the graveyard and pick out a plot. That’s something that no parent should ever have to do for their child or their baby. It was sick. It still makes me feel sick thinking about having to do that.”
Following Emmeline’s death, the couple went on a short holiday to escape the “deafening silence” of home. “When we came back from that little holiday I think I found it particularly difficult because it was all over,” Billy says. “It was properly all over. Emmeline is gone. People go back to their normal ways of life. Life goes on but we’re left here with this massive void, with this emptiness and this pain.
“We both got counselling as individuals and as a couple and that really helped. It doesn’t solve anything and it’s difficult doing it, but the benefits we both got from that as individuals and as a couple were huge. At times you felt guilty for being happy, just for smiling or laughing at something. You just felt guilty, you can’t, you’re the father of a six-month-old baby who has just died. How can you be happy, you don’t deserve to be happy. It’s just wrong.”
Billy felt “very nervous about going back to work”.
There were a lot of guys who didn't want to ask me directly how I am
“I felt like everybody would be staring at me. The guys were great when I went back and they were asking ‘how are you’ but as the days and weeks go on that stops. I had close friends who were asking me how I am and I was lucky to have that. I really appreciated the offer to meet up, or chat over a text or a phone call. But then there were a lot of guys who didn’t want to ask me directly how I am.
“They wanted to, but they didn’t know how to so they’d ask me how my wife was. I kind of found that quite amusing and I appreciated it, I really did. And then there’s some guys who just don’t know what to say or do, but if I was to bring Emmeline up with them and chat away, we’d have good conversations. We made it very clear when she passed away that we want to talk about Emmeline. This isn’t taboo.
Pain and loss
“But like with everything else, life goes on and their life goes on and we’re stuck with this pain and loss and people also forget. Some people expect you to move on particularly when we got pregnant late that summer and then when Matthew was born people just think you’ve moved on. Sometimes when you’re feeling particularly cynical, you feel that people think ‘oh they’re happy again, they’ve another child’. That’s one of the most insulting things you could think of.”
Billy felt a “huge sense of relief” that turned to “happiness and joy” when his son, Matthew, was born earlier this year. “There was excitement and determination to be the best father possible to this baby and try and appreciate the everyday things.”
Although Matthew has brought huge joy to his father, the natural comparisons bring their own pain.
“It was my birthday recently and I got to sit there with Matthew on my lap and blow candles and I just felt so sad I didn’t get to do that with Emmeline. We went down to Kerry a couple of weeks back and Lanlih’s family were down there, and all the cousins were down there from both sides of the family, but Emmeline wasn’t there. There’s just these constant stabs in the heart for everyday things but also in particular for big milestones. Matthew will be six months old soon and Emmeline died a day short of her six-month birthday.
“He can roll, he can give out, scream, feed. He can do so many things that Emmeline couldn’t do and that at times makes it sad. I suppose looking back on the differences between them, that can be difficult to see, even though there’s so much joy with Matthew.
“I feel like I’m going to get the happiest moments of my life through my family and through Matthew and maybe another child in the future. I just want to be able to get to spend time with him. I’d like to think I can always remember what I’ve learned from Emmeline – to always appreciate every day. To enjoy the little things in life, the everyday moments and the happiness you can get from a smiling baby boy who is also teething and shouting at you at the same time.”
Parenting in my Shoes
Part 1: Vicky Phelan
Part 2: Lynn Ruane
Part 3: Keith Walsh
Part 4: Victoria Smurfit
Part 5: Billy Holland
Part 6: Joanna Donnelly
Part 7: Eileen Flynn
Part 8: Matt Cooper
Contacts
Children's Hospice
, (01) 289 3151,
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[ (045) 894 538 ]
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