Baby Sophie’s legacy lives on

A hearbroken mother has spoken out her frantic efforts to resuscitate her newborn baby daughter before she died from suspected heart failure at their home in Ballina-Killaloe.
Sophie O’Brien, who was born on May 6 last with a serious defect in the left side of her heart, died less than four weeks later on June 2 with her family. Despite the best efforts of Darren O’Brien (31), Scariff, and his wife, Pamela (32), Sophie was pronounced dead within a short period of time at the University Hospital, Limerick.
In an emotional interview, Pamela recalled how her husband, Darren, sought her assistance after noticing a change in the colour of Sophie’s face around 11am.
“I held her in my arms, looked at her and thought she is not fine. I put her on her lovely fleecy blanket on her changing unit. I tapped the end of her feet. I called her name, she didn’t open her eyes. I knew there was something wrong.
“Darren rang the ambulance. Straight away I started the CPR. I knew within a few minutes she wasn’t responding.
“But I knew I couldn’t stop. I remember praying to Darren’s late Dad (Vincent) and asking him please don’t let her be in pain. I felt she was getting colder, I knew she was gone,” said Pamela.
When Sophie, who had Hypoplastic Left Heart Syndrome, was dying, her sister, Chloe (3) came into the room and said don’t be scared Sophie – “I am here and I love you”.
The ambulance crew started working on her and airlifted her in a helicopter to Limerick with Darren.
“I knew leaving the house, she needed clothes, as she wasn’t coming home. I picked up her pink outfit, hat, vest and pink blanket,” Pamela recalled.
When Pamela arrived at the hospital, medical personnel continued to try and resuscitate Sophie.
She was joined by her good friend, Ger and sister, Fionnula. A priest baptised Sophie, while Pamela and Darren sat by her side holding their hands. “A doctor came over and said they couldn’t do anymore and if she was revived, there would have been no hope for her.
“I never wanted Sophie to be in pain. My sister, Fionnula and an amazing nurse, Liz, who lived in Ballina, helped to dress her. Liz was so kind, she wanted me to hold Sophie as long as I could, so I held and kissed her.
“Liz stayed with us when they moved us to a side room. She brought down a lovely memory box and did her footprints,” she recounted.
Ten weeks ago, the O’Briens had never even heard of left hypoplasty and were just a normal family.
The couple, who have experienced every parents’ worst nightmare, decided to speak publicly in a bid to ensure Sophie’s legacy lives on by raising money for two charitable causes.
The couple also want to raise the public awareness of hypoplasty, having seen four babies and one four year-old child with this condition in Our Lady’s Hospital for Sick Children, Crumlin before their beds were taken by other children, apparently suffering from the same complaint.
On Sunday, Darren ran 10k in memory of Sophie at the Pink Ribbon event in Killaloe with Pamela’s sister, while other family members walked the route.
All of the family members who participated in the walk wore a special teeshirt with Sophie’s photograph printed on the front.
The last thing Pamela said to Darren before he did the run was, “Sophie is sitting on your shoulder, you can do it for her”.
“Sophie has done more for family and friends, some of who were not talking, than a counsellor could have done in a lifetime. She taught me tomorrow doesn’t matter, what is important is today, not to be cross over the small things,” she said.
“We can never thank people enough for their kind words and gestures and for the simple thing of remembering Sophie. She never gave up the fight for us.
“I was due to go back to work on the Tuesday. It was surreal that she decided to go on the Monday when we were all together,” says Darren.
They have drawn great courage and strength from the maturity shown by their daughter, Chloe, who turns four in September, which is way beyond her years.
When all their respective families had said goodbye to Sophie in the hospital, they told their daughter Sophie was very sick and that earlier that day ‘granddad came, Sophie’s got magic wings and she is going to fly to heaven’.
“Chloe went into the room, said hello Sophie, gave her a kiss and a cuddle and held her. It was important for us that Chloe held Sophie. After asking a few questions, Chloe said she wasn’t scared and then the rest of the family came in before the priest said more prayers. Liz brought her down to the room before the post mortem the following day,” Pamela recalls.
Pamela and Darren bought a loveheart best friends “me to you” chain for their two daughters. Sophie got the right side of the chain, while Chloe got the left side.
“They were typical sisters. They had an amazing bond. When Chloe would walk into the room, Sophie would look at her. The first night Darren went up to Dublin, Sophie caught his finger and wouldn’t let go. The first day I went to Dublin, Sophie opened her two eyes. The nurse said that is the first time she has done it. I remember thinking , ‘thank God she knows who I am’. When we left Dublin, the nurses cried with us.
“When Chloe would walk into Sophie’s bedroom, Sophie would open her eyes to look for Chloe. Even when I was pregnant, Sophie would kick when Chloe came up to talk to me,” said Pamela.
The day after the funeral, Pamela said they had to decide to get on with life and do their best for Chloe or stay at home and feel sorry for themselves, which wouldn’t achieve anything.
“Chloe came running in and said where is Sophie. We explained again that Sophie was gone. Chloe turned around and said ‘Sophie is in a better place’”.
The day they found out their second daughter had a heart defect, Chloe insisted the baby should be called Sophie, despite the protests of her father, who joked it would be a boy.
When it was confirmed their second child would be a girl, Chloe bore the biggest smile in the world.
The couple have also been struck by the huge support they have received from family, relatives and friends, too numerous to mention.
Darren works with Joey Kavanagh butchers in Scariff, while Pamela has been a care worker for the Daughters of Charity, Limerick for 12 years.
Someone bought Sophie a white teddybear balloon while she was in Crumlin, which they brought home and the night before she died it started to deflate.
They were given a beautiful pink and white crocheted blanket, which they kept at home.
Pamela’s heart went out to another family in the locality whose child died the same day, apparently in similar circumstances.
“I got this strange feeling the two babies would be together. Hopefully, they will fly to heaven together,” she said.
She experienced a great feeling of peace and support from the local community following the Pink Ribbon Run.
“It was great to see so many people in pain, who can keep going as well,” she explained.
The couple discovered Sophie had Hypoplastic Left Heart Syndrome after a 31 weeks scan at the Regional Maternity Hospital, Limerick. This meant that the left side of her heart hadn’t developed correctly and that if she survived birth, she would need three operations at three days, three months and three years.
Following the diagnosis by Professor Cotter, the couple took her advice to meet the team in the Coombe Maternity Hospital, Dublin including Professor Daly and cardiologist, Orla Franklin and another nurse who confirmed this condition, explained what it meant, challenges and risks for Sophie.
Doctors advised Sophie should be delivered in Dublin to give her the best chance of survival after birth.
However, Pamela got very sick the day she was supposed to travel to Dublin, resulting in Sophie being born by C-Section on May 6 at 21.39 in St Munchin’s Regional Maternity Hospital, Limerick. The couple had her for a short period before she was transferred to Dublin by a medical team including an ambulance crew.
Darren travelled to Dublin shortly after Sophie was born and he was joined by Pamela, when Sophie was six days old.
After her delivery, Sophie did very well, went onto a ward very quickly, had a good pink colour and only moved to an intensive care unit to boost her oxygen supply where she remained for two weeks.
Two operations were successfully completed at three and seven days. However, these were not her major operations, as she was so small and premature, weighing only five pounds.
“Sophie was a feisty little baby and was regularly causing trouble pulling out wires from her equipment. She was really fighting her own corner. To look at her, you wouldn’t know there was anything wrong. The consultants said she was the smallest but the loudest,” Pamela recalled.
Gradually she got stronger and stronger and was moved back to the ward where she was doing very well on a bottle.
When Sophie was discharged on Wednesday, May 28 she was welcomed home by their extended families. The couple brought Sophie into the Crescent Shopping Centre on Saturday and later that evening travelled to Scariff for her grandfather’s anniversary mass.
Things were normal on Sunday when they went to her grandmother, Delia Moroney (85) who doted over the new baby. Little did they know that tragedy would strike the following day.
Darren brought Sophie back from UHL in the outfit she originally wore returning from Dublin and put in her Moses basket at home in Ballina. The first night of the wake was confined to close family and friends and the following night was open to everybody.
Leaving their house in Ballina for the last time, the couple took turns holding Sophie while Pamela sang to her and took the advice of Bodyke, Tuamgraney and Ogonnelloe parish priest Fr Donagh O’Meara not to rush the ceremony.
“Darren and my brother put her into the coffin. We kept saying it was such a big coffin. By the time she was in and her little teddies, prayers, letters from relatives were put around her, it was full.
“Darren and I carried her coffin from the house to the car. It was very important that the four of us went in the car together to the church.
“Our very good friend, John drove the car. We put the coffin on Darren’s knee, Chloe was in her car seat and I sat in the front. It was such a beautiful sunny day. I remember saying you have done this Sophie, you have made this dry. I felt she was with us.
“The day Sophie had died, we left Chloe with good friends. Our friend had given us this white feather that had fallen beside Chloe. I got this feeling that was Sophie sending a message to Chloe but she hadn’t sent a message to us.
“At the grave, Chloe said her goodbye. We told her Holy God is going to fly Sophie to Heaven. We sat in the car with Sophie and told her we loved her to the moon and back. I always said that to her even in hospital. It is important for me that she is not going to be forgotten.
“After the burial, I remember breaking down and saying to Darren, she didn’t send us a sign that she is OK. When everyone had gone, this beautiful small robin redbreast landed on the headstone and tweeted at us. Darren looked at me and said, that is Sophie. I said it is not. It landed up on the tree and tweeted at us.
“Then I got this beautiful calm feeling before the robin flew away. Chloe always wanted to bring Sophie a balloon, which she did when she was in hospital. We left three go up the day of the funeral. Chloe turned around to my brother and said ‘Sophie has got her balloons, she is OK.’”.
“We can’t get over how many people came and gave us so much support, particularly from people who hadn’t met Sophie. They all said Sophie looked like an angel or a porcelain doll in her pink outfit,” says Pamela.
Sophie was laid to rest in the family plot where Darren’s father, Vincent O’Brien (69) was buried in the old cemetery in Tuamgraney. He died from cancer when Chloe was only eight months old. This followed the celebration of solemn requiem mass by Fr Donagh O’Meara in Scariff Church where the couple had got married and had christened Chloe. Chloe said the special prayer for Sophie and brought up her teddybear as one of the gifts to the altar.
All the family and relatives wore pink and white at the funeral mass.
“The Mass was lovely and surreal. I got up and told Sophie’s proper story to ensure there weren’t rumours” Pamela said.
The couple have already started raising money for two charitable causes – the Ronald McDonald House behind Crumlin hospital, where they stayed for three weeks, and the new €4.5 million 25-bedded cardiac unit in Crumlin, where Sophie received top class care in a facility, both of which rely on families’ fundraising.
One of their objectives is to raise €1,000 to cover the cost of erecting a plaque in Sophie’s memory in the Ronald McDonald House.
A sum of €433 was raised for the Ronald McDonald House from donations instead of flowers at her funeral mass.
Another €400 donation came from the Tuamgraney Tidy Towns, who held an ice cream fundraising event and this will be given to the cardiac unit.
Darren is also seeking sponsorship to run the Dublin City Marathon next October for the cardiac unit. Donations can be given on line at www.cmrf.org. Sponsorship cards will be available at local shops in Scariff over the coming weeks. Any excess money from the plaque appeal will be donated to the Crumlin cardiac unit.

By Dan Danaher