Woman still awaits cause of baby's death after 21 agonising weeks
A grieving woman who went through the heartbreak of losing her first baby after discovering it had a foetal abnormality has spoken of her "hurt" of facing a 21-week wait in finding out more about the cause of death.
The husband and wife from Belfast, who do not wish to be named, were left devastated when they were told that their baby had a rare condition that affected one in 10,000 and would not live.
Doctors also said that the woman's life was at risk from carrying the baby – meaning they had to make the agonising decision to undergo a termination in February.
The woman told the Belfast Telegraph she has been left in an "emotional limbo" waiting on postmortem results from the Belfast Trust for over 21 weeks.
Without the results – which they expected within six to 10 weeks – the couple say they are unable to try and conceive again in case there are any genetic complications.
The 29-year-old woman is calling for better aftercare and more funding for counselling services in Northern Ireland for couples who have lost a baby.
"It is hard enough to come to terms with the fact we lost our first baby. But this wait just makes things worse," she said.
The woman claimed she failed to receive proper aftercare advice and has faced problems accessing grief counselling – with one charity having a 10-week wait for a face-to-face appointment.
The trust has launched an investigation into the woman's complaint.
However, it has also emerged the couple experienced further anguish as the ashes of their baby had been sitting in Roselawn Crematorium for weeks without them knowing.
The couple, who married last year, were told the heartbreaking news that their baby had the rare condition which meant it would not survive when the woman was 16 weeks pregnant.
It was discovered her baby had 'limb body wall' – a serious congenital disorder.
This condition can lead to the baby having no torso, legs or sternum, and organs are often on the outside.
The spine can be curved and the heart can have serious problems.
The couple had to make the painful decision to follow the advice and undergo a medical abortion.
"It was a terrible situation to be in. This was my first baby. We had been so excited about it," she said.
The serious problem was first spotted during her 12-week scan at the Royal Victoria Hospital.
Termination is illegal in Northern Ireland.
But the exceptions are to save a woman's life, or if there is a risk of permanent and serious damage to her mental or physical health.
But, despite the difficult circumstances, the woman felt she left the hospital without adequate support.
"I wasn't given any information as to how to care for myself, like having to return for a six-week check-up which is normal," she said.
"They just got me to fill out the postmortem forms and I was given was a baby box, blankets and a leaflet for the support charity Sands, that's it."
Since then she said she felt like she had been passed from "pillar to post" waiting to find out the results.
"They told me when I filled out the postmortem forms it would be six to 10 weeks, we are now at 21 weeks and I still haven't heard at thing," she said.
"They keep saying they are investigating. For me I need to know what happened and if I get pregnant again will I go through this again?
"I just want someone to give me answers, waiting this long just adds to the hurt that I feel.
"We were told we shouldn't try to have another baby until we get our full genetic profile which is part of the postmortem.
"I understand that the staff are under pressure but I can't help the way this whole experience has made me feel.
"My GP has been very supportive but she was shocked to find out that the Ulster Hospital had a dedicated bereavement midwife but didn't think the Royal did."
The couple faced further distress when the woman discovered the ashes of their baby had been sitting in Roselawn Crematorium "for weeks".
A family member who works with funeral services discovered a delay in letters being posted.
The trust confirmed that due to a "misunderstanding" between between the trust and Roselawn there was a delay in issuing some letters.
"This was only for a short period of time and the matter has now been rectified," a spokeswoman for the trust said.
The trust has now arranged a meeting with the woman later this week.
A statement said: "We are sorry that the woman had concerns regarding her care.
"Our complaints team are currently investigating issues raised by this patient and will make contact directly with her."
Northern Ireland Sands helpline – 07740 993450
Cruse Bereavement Care has seven areas located throughout Northern Ireland:
Main number is 08444 779400
ARC helpline: 08450 772290
Miscarriage Association helpline: 01924 200799
Unnecessary delays just add to distress, says charity
Delays in receiving results of medical tests or postmortems after suffering the bereavement of a baby can add an "extra layer of distress" for women and couples, a leading charity has said.
The comments were made by Antenatal Results and Choices (ARC) which provides specialised support to those who have experienced the loss of a baby after a prenatal diagnosis reveals there are complications.
UK director Jane Fisher said it was crucial that they were given information from investigations as quickly as possible.
"It is a traumatic experience and we know the shock and grief involved can be overwhelming," she said.
"For many parents, the only way to regain hope and move forward is to have the possibility of trying for another baby. Before doing so they will want to understand any risks they may face in the next pregnancy.
"It is crucial they are given information from postmortem investigations and other postnatal tests as soon as is practically possible.
"Unnecessary delays will add an extra layer of distress to what is already a very painful time."
The charity also said it was important anyone who has experienced a loss received adequate support.
A spokeswoman for the Belfast Trust, however, said: "We have limited support from a clinical philologist for women after the loss of a baby, this is dependent on individual circumstances.
"Support is available though GPs, community midwives and charitable organisations."
Among those charities that have supported couples who lose a baby is Cruse, the national bereavement charity.
Anne Townsend, director of Cruse NI, said: "Most people who come to Cruse it is GPs who are advising them to come to us. It is a huge challenge. We are doing all we can to meet our local community but it can't be just one organisation."
Another group that provides support to women and couples is Sands, the stillbirth and neonatal death charity. It says "high-quality, sensitive care" is crucial as this has an enormous impact on a person's long-term wellbeing.
"We are committed to working with health professionals to improve the care of women both during their pregnancy and in the event of bereavement," a spokeswoman said.
Its support services for parents also includes a telephone helpline an online forum.
It's crucial to have support on leaving hospital
Almost every woman and partner wants to know why things go wrong.
A postmortem can help with the answers. It is not that it makes you feel better but it is part of a feeling of closure that you understand more about what happened and why it happened.
But also whether there are any genetic components that would make an impact on future pregnancies – because that is a really big part of understanding why it happened.
A woman probably wants to know is it a chance event, is it something that is wrong with us and could happen again?
That is all part of a postmortem. If a postmortem came back and actually said we thought your baby had this problem but they didn't, that is also really important. That could make a major difference. Having a really good pathologist examine the little one and give information and talk it through with parents and talk then to maybe a genetic counsellor can really help.
The fact is very few hospitals in Northern Ireland and the UK mainland have bereavement counsellors or specialist counsellors or support – it is really sad but true.
It is just very hard, when you come out of hospital in that sort of sense and shock and grief even the thought of having to pick the phone to ring somebody can seem a really, really hard thing to do.
So having the feeling of support after losing a baby at any stage is hugely important.
Ruth Bender-Atik is national director of the Miscarriage Association