Tuesday, July 03, 2007

Mum's campaign gives others space to grieve

FOR mother Pam Allen, losing one baby was a traumatic enough experience, but the prospect of losing another was unimaginable.

So when her son Josh came into this world unable to breathe, exactly a year to the day after his sister Carys was stillborn, Pam felt as though her worst nightmares were about to be realised.

"I just kept thinking, here we go again - this is history repeating itself," recalls Pam, struggling to find the words to describe the moment when she realised something was so desperately wrong.

"I just kept asking myself, is he going to live, is he going to survive. I knew I just couldn't go through it all again."

As soon as Josh was born, the oxygen-starved youngster was whisked away from his helpless mother so he could be resuscitated. Over the next week, as Josh recovered and was transferred from intensive care to special care at the maternity unit of the Edinburgh Royal Infirmary, Pam and her civil servant husband Derek were beside themselves with worry.

"It was just all such a blur," says Pam. "I just thought we were going to lose him. I thought, this is going to happen all over again."

The distress of Josh - who was three weeks early - struggling for life, was heightened because exactly a year earlier, on March 6, the 24-year-old's daughter Carys was stillborn.

To make matters worse, after Pam and 25-year-old Derek were told their daughter had died, during the 24-hour labour that followed, the couple could clearly hear a baby's heart beating on a monitor in a neighbouring room.

And instead of being allowed to say goodbye to Carys somewhere away from parents celebrating their new arrivals, Pam was relocated to a room on the maternity ward, where she could see new mothers and hear their babies' cries.

Pam felt her treatment was "unacceptable" and, after being discharged from hospital, the distraught mother made front page news after she complained to NHS Lothian, the health authority responsible for running the hospital.

She also joined widespread calls for a dedicated room to be made available where bereaved families could spend quiet time saying goodbye to their babies.

Now health bosses have finally agreed that this facility is necessary, and a special bereavement room will be officially opened next month.

"I really think this will make a big difference to other families as it will mean so much to them to be able to spend some more intimate time with their child," says Pam.

"But it's such a shame that it has taken so long to get something. If this had been available when we were there with Carys, we would have spent a lot more time with her.

"It is one of my biggest regrets that I didn't spend as long with her as I would have liked, and the family were not able to come in and see her."

These days, although Pam, of Pencaitland, East Lothian, loves nothing more than spending quality time with Josh and her three-year-old son Dylan, her joy is tempered by the sorrow she feels when she remembers Carys. "This whole year has been a real roller-coaster of emotions," she sighs. "Sometimes I think I am doing pretty well and all of a sudden I am back down again. I still go through periods where I feel really flat and can't believe what has happened - like I am looking down on someone else going through it all.

"It's been really hard. We never want to forget Carys but sometimes the emotions are so strong it's like you are going through it all again."

Carys was born when Pam was 34 weeks pregnant and, as the time when Josh was due crept closer, the care assistant became increasingly anxious.

"I was really happy when I found out I was pregnant again but really scared at the same time," Pam says. "I didn't want to get my hopes up or get excited. It was almost like being in denial - like my body protecting itself in case something went wrong again."

But the pregnancy also gave the couple, who admit they were desperate for another baby, something to look forward to.

"We will never forget Carys, and another baby was never going to compensate for her, but we were both so desperate for another baby and me being pregnant gave us something to focus on and to look forward to," says Pam.

"But, as it was getting nearer to the time that Josh was born, at maybe 33 weeks or so, I started to get a bit panicky because of what might happen."

After visiting the hospital on several occasions for reassurance that all was well, doctors suggested that labour could be induced.

It was close to the anniversary of Carys's death and the couple were aware that their son could be born on that day, but they decided Josh's safety was paramount and inducing labour was the best option.

"We were given a bit of a choice but I couldn't hold off any longer," says Pam. "As it was getting nearer to the time it was really hard not to think about what happened with Carys. It was completely our choice and, we thought, what was meant to be will be."

It is now just over four months since Josh was born weighing just over 7lb 9oz, following what had been a difficult birth.

"It was a really scary start to him being here," admits Pam. "But he's fine now and has been brilliant. He's such a good baby and Dylan absolutely adores him."

Josh has had a profound effect on his three-year-old brother Dylan, who was also affected by the death of the little sister he calls Ca-ca.

"You try your best but it was sometimes really hard not to cry in front of Dylan," says Pam.

"Sometimes when we go past the cemetery, he gets upset and will start asking questions like 'where's Ca-ca, mummy'.

"He's at the age where he's asking lots of questions and we are trying our best to explain it to him. But we want him to grow up knowing he's got a sister.

"Dylan has just accepted Josh into his life and I think he's glad of the company.

"He's fantastic with Josh and, with things as they are, we couldn't have wished for more."

Now Pam and Derek are doing everything they can to devote themselves to caring for their two sons, while cherishing the memory they have of Carys.

Pam says: "It was hard for us, the way Josh came into the world and how his life started, and I can't help wonder if he would even have been here if Carys was still here.

"There's a lot of mixed emotions. But there's no doubt that having Josh, who is such a good wee baby, has helped our grieving process and filled a void."

THE need for a special room where bereaved parents can spend quiet time with the baby they have lost without being disturbed by the happy bustle of the maternity ward has been highlighted repeatedly.

A bereavement room existed at the former Royal Infirmary, but when services moved to a new £183 million flagship hospital, no dedicated space was made available.

Recent statistics show that last year there were 49 stillbirths in the Lothians.

The new bereavement room was welcomed by Dorothy Maitland, manager of the Stillbirth and Neonatal Death Society (Sands) in the Lothians.

She said: "This will make a massive difference to families at what is such a difficult and traumatic time."

NHS Lothian's chief midwife Maria Wilson added: "Losing a child is a tragic experience. We have worked closely with Sands and other agencies to provide extra comfort and privacy for them."

Sands offers support to bereaved parents who have experienced the death of a baby through miscarriage, stillbirth or soon after birth. To find out more, telephone 0131-622 6263/6264.

This article: http://living.scotsman.com/index.cfm?id=1035352007

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