Baby Loss

Nick Boles Excerpts

Thursday 13th October 2016 Commons Chamber

[Antoinette Sandbach (Eddisbury) (Con)]

I beg to move,

That this House has considered baby loss.

It is an honour and privilege to open the debate, and I thank you, Mr Speaker, for giving us the use of your house to launch baby loss awareness week in Parliament yesterday, which is the first time it has been officially recognised. Parliament is helping to break the silence around the death of a child, which is the most devastating loss that can happen to any parent. Last year, when my hon. Friend the Member for Colchester (Will Quince) spoke in the Adjournment debate, neither of us was prepared for the huge response from parents who have suffered similar losses.

In the Prime Minister’s recent speech, she spoke about tackling injustice where she found it. The sheer scale of child loss in the UK is an injustice, and one that is suffered by so many families year in, year out. Child loss is devastating for each family involved. I should like to outline the size of the problem facing parents, speak about what can be done to prevent loss on the scale we currently face in the UK, and finally talk about bereavement care and best practice to support parents through such a terrible time.

The major types of child loss include miscarriage, stillbirth and neonatal death, although the Department of Health needs to look at streptococcus B deaths, ectopic pregnancies and many other specialist areas such as multiple birth pregnancies.

One in four pregnancies will end in miscarriage. This is often a silent killer, one where parents receive very little support. Of the estimated 200,000 mothers and their families who are affected by miscarriage every year, many will suffer in silence and isolation. A woman has to go through three consecutive miscarriages before any investigation will be carried out.

Ms O’Sullivan, speaking of her experiences after four miscarriages, said:

“The lack of recognition for miscarriage often just serves to reinforce the flawed idea that somehow a pregnancy ‘didn’t matter’, which increases the feelings of isolation”.

She went on to say:

“The loneliness and isolation that miscarriage brings, and the way that it can affect other aspects of life—hopes, dreams, decisions about work—are so difficult and yet under-recognised. We need to demystify it and make it okay to talk about.”

One parent I know wrote this to me:

“Before I even knew I was pregnant I developed a butterfly rash across my chest. My GP dismissed it as an ‘allergic rash’. No blood test, nothing. When I miscarried 9 weeks later at 12 weeks, my GP cheerily said, ‘Keep trying. Miscarriage is common at your age.’ I was 37. No blood test. Feeling disheartened and dismissed I went onto a further two early miscarriages without even daring to call the GP and waste his time. At my fourth miscarriage, I started googling. I approached my GP again—could all this be due to my existing thyroid condition? ‘Extremely unlikely’ was the response. Again, no blood test, but a recommendation to quit my stressful job. I obliged. It was only at a routine annual hospital check-up with my thyroid doctor after my fourth miscarriage four years later that I heard, ‘This sounds like Hughes syndrome, let’s do a blood test.’ St Thomas’s hospital confirmed the diagnosis, but sadly not soon enough to save the baby I was carrying—my fifth. Happily, after proper treatment I became pregnant again, finally giving birth to a healthy boy on the eve of my 42nd birthday. After five miscarriages and five years of my life lost to hope and grief and hope again due to my GP’s ignorance, I still feel cheated and, shame on me, a little bitter. I urge you please, give miscarriage the research, resources and respect it deserves.”

This is just one example of why we need action to help us to find the root causes of miscarriage. I am pleased that earlier this year the first miscarriage research centre in the UK dedicated to preventing early miscarriage opened. That centre is working with Warwick, Birmingham and Imperial NHS trusts, as well as Queen Charlotte’s. It is undertaking excellent research. I know that because my sister, who has had seven miscarriages, has benefited from its work. This year, she gave birth to baby Ella. I am thrilled for her.

The clinicians there, Dr Maya and the team, Dr Tom Bourne and others are doing ground-breaking work on the Genesis Project, looking at the issues around early miscarriage. As an example of how dedicated the staff are, the receptionists who had seen women walking in and out of Queen Charlotte’s, organised for the first time, and in their own time on a Saturday, a multiple miscarriage support group. Clinicians and psychologists also attended in their free time. It has benefited a huge number of women. That learning has the potential to really help to support the work the Government would like to achieve in tackling our child loss rates.

In 2014, 3,245 stillbirths were recorded by Embrace UK. That rate is shockingly high for a high-income country. Even more frightening is the fact that the causes of 46% of stillbirths are unknown. This is devastating for families who want answers. It is also unacceptable in this day and age that more is not being done to identify and investigate the cause of death. When combined with neo-natal death rates, over 6,000 patients are suffering child loss every year. Feelings of isolation and loneliness are experienced by parents who suffer other forms of child loss. Data on tackling stillbirth in The Lancet rate the UK 114 out of 164 countries for progress in reducing stillbirth. Justin Farrimond, who engaged in the digital outreach debate organised by the House on Monday, put it this way:

“To the nurse that had a bad day, that didn’t take correct measurements, that failed to notice a lack of growth, that chose not to look at previous records, that decided not to engage with the mother, that was instrumental in the loss of our baby—we don’t want an apology—your actions were unintentional—we don’t want you to lose your job, you need to continue in your post. In future we know you will be more careful, you will be a model nurse, because you will know what can happen if you have just one bad day. When you have lost a baby you don’t want revenge, retribution, or compensation. You only want to be understood, and for it to never happen again”.

That powerful quotation reflects what so many parents have said to me. They want lessons to be learnt. Most of all, they do not want it to happen to anyone else.

In order to achieve that, there needs to be better investigation of full-term stillbirth where no foetal abnormality is present. There needs to be greater willingness by medical staff to discuss the value of post mortems with parents, so that causes can be identified. There needs to be better and thorough investigation. Professor Cameron of the Royal College of Obstetricians and Gynaecologists has stated:

“The quality of local investigations into cases of stillbirth, early neonatal death and severe brain injury occurring as a result of incidents during term labour must improve”.

[Nick Boles (Grantham and Stamford) (Con)]

My hon. Friend is making a wonderful, wonderful speech and I am very glad to be involved in this debate. I am here because of my constituent Rolf Dalhaug, who lost one of his twin sons, Thor, due to some mistakes during birth. He is particularly concerned that we should take on board the messages in the report to which my hon. Friend has referred about the importance of learning and reviews. I want to underline the point she is making and look forward to hearing the Minister say what we are doing to ensure that that happens.

[Antoinette Sandbach]

I am grateful for that intervention because it makes the point entirely.

Professor Cameron went on:

“Stillbirth rates in the UK remain high and our current data indicate that nearly 1,000 babies a year die or are left severely disabled because of potentially avoidable harm in labour. The emotional cost of these events is immeasurable…When the outcome for parents is the devastating loss of a baby, or a baby born with a severe brain injury, there can be little justification for poor quality reviews. Only by ensuring that local investigations are conducted thoroughly with parental and external input, can we identify where systems need to be improved. Once every baby affected has their care reviewed robustly we can begin to understand the causes of these tragedies.”

The parents who engaged in the digital debate on Twitter earlier this week to raise their concerns about baby loss spoke of the need for third trimester scans and greater consistency of care during the pre-birth period, during labour and following the loss of an infant.

I want to move on to neonatal death. Mr Speaker, as you know, I spoke about my experiences with Sam last year. Parents from around the country wrote to me of their experiences, some dating back many years and others from more recently. One father told me about his son George. He wrote:

“On 7th November my wife and I were delighted when baby George came into our lives, but on the 5th January just days after the festivities our lives were rocked, when our beautiful baby boy passed away in his sleep. Nothing could have prepared us for the hopelessness and feeling of loss, each morning waking up wishing that it was just a bad dream. As we watch the seconds turn into hours, days, weeks and even months, things for us felt hopeless, it was only the knowledge that our other children needed us that kept us from drowning in self-pity.”

George’s father went on that, like other parents,

“I found everyone affected share similar experiences, all wanting to do something, all wanting to make a difference. This is probably why I still feel I should do more, and more is never enough. I am now putting my spare time into raising awareness of sudden infant death syndrome and raising money for charities”.