Bereaved Grantham mother calls for more support after stillbirth
A mother wants to increase support for parents who have a stillbirth after her own heart-breaking experience.
Harriet Musson and her partner, Toby Steventon, 25, had a daughter in March. Due to a rare genetic condition she was born when Harriet, 24, was 30 weeks pregnant on March 11.
The Grantham couple both passed on a faulty gene called ‘Piezo 1’, which caused their unborn daughter to develop a type of lymphoedema. Harriet describes the case as “extremely rare” - one of 12 cases worldwide.
Harriet and Toby had been told there was a slim chance their baby girl would survive, but they wanted to give their daughter that opportunity.
Harriet said: “Our beautiful girl didn’t just pass away unexpectedly.
“We had been told a few months beforehand but continued the pregnancy because we were almost 20 weeks and there was a small chance she would survive and we wanted to give her that chance.
“We didn’t want to be the ones to end our baby’s life. If she was going to go, she was going to go comfortably inside me, feeling safe and warm and knowing that she was so loved.
“She fought for so long and so hard, but then her little heart gave in with all the swelling and she grew wings.”
Harriet felt the support provided was lacking.
She continued: “I was told I would have access to counselling after being told that my baby was extremely poorly and likely to pass away, but the counselling never happened.
“When she was born, I was led out of the back entrance of the hospital so no-one else would see a baby who had passed away.
“But when pregnant I had to sit in the main entrance, where people were leaving hospital with their new babies and going home, or coming out of scans excited, while I had to sit there knowing my baby was likely to pass away and I wouldn’t have a baby to take home with me.
“It was totally inconsiderate and most times I’d end up having panic attacks before I even got into my scans.”
Although the couple live in Grantham, Harriet gave birth at Peterborough City Hospital, where she said her main midwife and gynaecologist were “lovely”.
North West Anglia NHS Trust runs Peterborough City Hospital. Chief nurse Jo Bennis said: “We strive to provide our patients with outstanding care and experience. Unfortunately there is a national lack of counselling available to those affected with all kinds of health issues, and we are not immune to this situation.
“We do give bereaved parents a list of charities and support groups such as Sands and Tommy’s.
“When families wish to take their babies home following bereavement, we offer to escort them out of the hospital via the side entrance to maintain privacy, so that they don’t have to walk through the crowded atrium which can be distressing.
“We always check personal preferences and if anyone feels that they would rather walk out of the front entrance then this is respected and a midwife will still accompany them to the car.”
She had approached charities that offer still-birth and miscarriage support online, but said “you only get a certain amount of time on them and a different person every time, so you have to explain the whole situation over and over again and you only ever get to the same place when time is up.
“It’s like everywhere I turn, doors are being slammed in my face,” she added.
Harriet said she also feels she has had no “professional support” since the birth.
“The lack of support has been shocking. I had one really kind community midwife from Grantham who came around just for a chat and to see how I was at the start, but after that I had no one.”
Five months after her daughter was born, Harriet continues to battle with her grief and depression, while looking after her three-year-old, Hallie.
She also fears the genetic condition will cause problems if they try for another child, with a one-in-four chance of it happening again.
Harriet believes it is easier for people to receive counselling for miscarriage than for a stillbirth, because it is more common.
She added: “With stillbirth you carry your baby almost full term, feel them move, buy all your baby items, see them on many scans and are excited for your new arrival and knowing you’re getting closer to meeting them.
“Or, you carry your baby knowing they’re likely to pass away but not wanting to give up on them.”
Harriet described how she was induced, went through labour, and delivered her sleeping baby into a silent room, before handing her baby to the funeral home.
She felt she received the most support following her daughter’s birth from Co-op Funeral Care in Grantham.
“The people caring for us and our beautiful girl were fantastic and so compassionate,” she said. “They even told me I can pop down any time for a chat and a cup of tea.”
While Harriet has been accepted for cognitive behavioural therapy to help her with her anxiety about the genetic condition striking again, she feels she really needs counselling for her grief.
“Some doctors need training, which they should already have, on how to speak to patients who are going through things like this too. I was left by one doctor feeling like she was blaming me for the death of my baby because of our genetics.
“She got frustrated when I was crying and asked me when I told her I’m struggling emotionally, ‘why?’.
“After telling her I’d just given birth to my stillborn daughter she replied ‘I know’. So why was she asking why I’m struggling?
“She made it seem like a huge effort to hand me tissues while I was sobbing in front of her, and offered me nowhere to turn for any support.”
Harriet said shortly after that conversation she had “a huge panic attack”.
“It’s left me feeling like I can’t even approach the doctors for support,” she said.
“Something has to change. There’s all this media attention about how ‘mental health matters’ but in my case it seems it doesn’t.
“If mental health matters so much then where is the support for people going through such traumatic and horrific times like we have?”
A spokesperson for the Lincolnshire Integrated Care Board said that this situation for Toby and Harriet was "not the norm".
In a statement, they said: "There is counselling capacity within the Trust, however where this is exhausted they do advise other avenues to access support.
"Also, individuals registered with a GP can also self-refer for counselling in their local area. Find an NHS psychological therapies service (IAPT) at www.nhs.uk.
"I am sorry if the option for counselling was not provided prior to the birth either via the Trust’s own service or through the other external avenues listed in this response.
"Peterborough Hospital have confirmed that support is available from the midwives and the bereavement midwife.
"In the first days post stillbirth, contact information to access support is normally shared by the Maternity Team, although it is acknowledged some parents may not want to access bereavement support immediately and therefore contact can be made at a later stage in the first month post the stillbirth. "
The spokesperson advised that parents who have experienced this should contact the Bereavement Specialist Midwife at the hospital or alternatively visit national websites https://www.sands.org.uk/ or https://www.tommys.org/.
