Rachel’s and Dean’s twin sons, Kim and Kam, died from a condition called twin-to-twin transfusion syndrome at The Royal Cornwall Hospital in Truro.
This week, Dean also joined the Steffan Powell show on BBC Radio 5 Live to share his & Rachel’s experience, raising awareness of TTTS and honouring Kim and Kam.
We are proud of his and his Rachel’s strength to share such a painful experience to raise awareness and inform other parents of twins of the risks of this little known but not uncommon condition.
What is twin-to-twin transfusion syndrome (TTTS)?
In a twin pregnancy where the babies share a placenta, they also share the same blood supply. Twin-to-twin transfusion syndrome is a complication where one twin receives more of the blood supply than the other. Diagnosing TTTS can be done by performing an ultrasound scan where doctors try to see if one twin has significantly more amniotic fluid around them than the other. Unfortunately, this isn’t always possible as in some cases, the symptoms can be more subtle. Tommy’s lists the symptoms as; sudden pain or swelling in your tummy and/or back, suddenly feeling out of breath and changes in your babies’ movements.
Whilst TTTS is rare (occurring in around 5 – 15% of identical twin pregnancies), it is a well-known risk which can have devastating consequences. Therefore, if you are pregnant with twins and they share a placenta, your doctor should be on the lookout for these symptoms, as well as performing regular scans.
Rachel’s and Dean’s story
Rachel’s twin pregnancy was going well – however at nearly 7 months, she started to experience breathlessness, and her heart was racing. Approximately a week later, she felt pain in her left side which grew progressively worse. She contacted her GP and was advised to take paracetamol, however the pain continued and the next day on 6 November 2021, Rachel and her partner Dean went to the Emergency Department at Royal Cornwall Hospital. On arrival, Dean was not allowed to accompany her, purportedly due to Covid regulations. This left a pregnant couple divided and Rachel without an advocate.
Rachel was assessed by Emergency Department doctors, however her high-risk twin pregnancy was not considered. She received an initial diagnosis of kidney stones and was sent home and asked to return the next day for a scan. She was not seen by an obstetrician.
After a painful night, Rachel returned to the hospital the next morning. A scan was performed and the radiologist confirmed they could see a small stone. Doctors continued to work on the assumption that the stone was the cause of Rachel’s pain, despite Rachel expressing concerns about bleeding and that Kim and Kam were not moving as much as normal. There had still been no obstetric review.
Later the same evening, Rachel was transferred to the maternity unit and Dean was allowed to accompany her. A midwife tried to locate Kim’s and Kam’s heartbeats, but struggled to identify both. Subsequently, an obstetrician was called to perform a scan. Rachel and Dean expected this to be the bedside ultrasound scan that all pregnant couples are familiar with, however a small handheld mobile device was used. The obstetrician used this just to confirm that both heartbeats were beating.
Rachel was then seen by a urologist who advised that whilst there was a kidney stone, they didn’t think it was the cause of her significant pain as it was very small. They assumed that she may have passed a bigger stone previously, which may have caused some damage.
Later that evening, an attempt was made to check Kim’s and Kam’s heartbeats by CTG (a machine which measures a baby’s heart rate). This was not completed, as the placement of the machine’s straps significantly increased Rachel’s pain and discomfort. Rachel and her babies were not assessed again that night, and her pain continued.
The following day Rachel was seen by a general surgeon, who felt her pain was caused by a muscular skeletal issue, rather than a kidney stone. Following a very brief discussion with a fetal medicine consultant, once again Rachel was sent home. She was still in significant pain.
The following morning (9 November 2021), Rachel went to the bathroom and noticed she was bleeding. She called the hospital and was advised to come in straight away. Rachel and Dean went straight to the hospital and staff tried to perform a CTG. Sadly, they were unable to locate two heartbeats. An ultrasound scan was subsequently performed, which showed that tragically Kim had passed away and that Kam was in distress. Devastated, Rachel and Dean agreed that they wanted Kam to have the best chance of life, and so an emergency c-section was performed. Kam was born first and given immediate neonatal care. Kim was stillborn shortly afterwards.
Rachel and Dean now found themselves in an indescribable situation of trying to mourn Kim’s passing whilst attempting to focus on Kam’s struggle for life. Kam was extremely sick, so he was transferred to Derriford Hospital, Plymouth on 10 November. Sadly, despite ongoing treatment, he died on 5 December 2021.
Rachel and Dean shared with us about their experience “We were overjoyed and overwhelmed to find out we were expecting identical twins, as this is a rare occurrence, however we now know that the risk of TTTS affecting this type of pregnancy is not uncommon. Before becoming pregnant with twins, we had never heard of TTTS. We wanted to share our story to highlight the dangers of TTTS and the devastating impact it can have, especially if the symptoms are not recognised. The tragedy of our story is that our boys may have had a chance to be with us today, had doctors and midwives been alert to the danger. We placed our trust in the notion that they understood the risks involved and had the appropriate training and knowledge. However, our story highlights that this sadly isn’t always the case. We would encourage any couple or mother expecting twins to be aware of the symptoms and discuss these with their health team, family and support network.”
The inquest process
An inquest was opened to investigate the circumstances of Kam’s death. Currently, coroners are unable to investigate the death of a stillborn baby (a baby born after 24 weeks of pregnancy who shows no signs of life). Therefore, despite Kim and Kam both receiving the same care, at the same time and both dying, legally only the death of Kam could be explored through the inquest.
Understandably, this was extremely upsetting for Rachel and Dean, and amplified their sense that Kim’s experience was not recognised or considered in the process, and did not matter as much as Kam’s.
The inquest took place in September 2024 and the coroner concluded that Kam died from natural causes contributed to by neglect. He identified the following:
- Failure to follow the Hospital’s own policy by not having Rachel assessed by an obstetrician on 6 November.
- Failing to perform a CTG and ideally an ultrasound scan to check the fluid around Kim and Kam.
- Failing to reconsider the view Rachel’s pain was caused by a kidney stone on 7 November when the urologist reported this was unlikely.
- The CTG on 7 November should have been reviewed by a doctor and repeated as it was abnormal – the notes wrongly recorded the trace as normal.
- Rachel should not have been sent home on 8 November without a thorough obstetric review.
The coroner recorded that there was a ‘gross failure’ to provide basic medical and nursing care that likely contributed more than minimally to Kam’s death. The coroner also took the unusual step of mentioning Kim’s death in his findings, recognising the importance of this to Rachel and Dean.
Rachel and Dean said “Our sons were identical, they were always together and they were mutually dependent on each other. In our case especially, it made no sense for them to be treated any differently in the inquest process. It is only through this process that we were able to find out the truth about what happened to our boys, however it was incredibly difficult that they were not considered equally. It felt like Kim had been forgotten by the system. We are immensely grateful to the Coroner for the small, but immeasurably important, step of including Kim’s name in his findings.”
There have been numerous calls over the years to widen coroner’s powers to investigate stillbirths, and a public consultation was held by the government at the end of 2023. The responses highlighted that views are mixed. Whilst there was support for coroners to be involved in investigating stillbirths, there were concerns about the impact on families as parents may be forced to have a postmortem performed against their wishes, inquests are public and they often taken a significant amount of time to be heard. There were also practical concerns about duplication with other investigations, the increased demand on resources (coroners and medical staff) and that it can be more complex to understand why a stillbirth happened, therefore, families would still be left without answers.
Enable Law’s role
Nicola Rawlinson-Weller, Medical Negligence expert from Enable Law is representing Rachel & Dean with Rhodri Jones of St John’s Chambers.
Our role was to ensure that the coroner was able to reach a reasoned and accurate conclusion, and to give Kam a voice by ensuring Rachel’s and Dean’s questions were answered. Whilst having legal representation at an inquest isn’t always necessary, it meant that we were able to argue for an independent expert specialising in TTTS to provide a report to the coroner. This was incredibly important to Rachel and Dean, particularly given their concerns that the treating medical staff didn’t fully understand the condition. It also allowed us to raise Rachel’s and Dean’s wish for Kim to be acknowledged during the process.
Inquests are, understandably, very distressing for families, and the process can be complex and draining. This often leads to families feeling overwhelmed and may mean they do not engage in the process. Families may also not be aware of the rights and options available to them, or how to argue for them.
Nicola said “The deaths of Kim and Kam have had a devastating impact on Rachel and Dean. This has been made harder by the knowledge that errors were made in Rachel’s care. Whilst it is reassuring that the Trust acknowledged this during the inquest, Kim being largely excluded from the process due to legal restrictions has exacerbated their feelings of not being listened to. I’m pleased that we were able to bring them some comfort through the inquest by obtaining answers to their question and the Coroner including Kim in his findings. I believe coroner’s powers should be extended to include babies who are stillborn. Every baby who dies counts, and every investigation may help to save lives going forward, which should be a top priority for everyone.”
Support available
If you are pregnant with twins and have been diagnosed with TTTS, or have general concerns about your pregnancy, you may find it helpful to contact the Twins Trust. They have numerous resources on their website and a helpline open Monday to Fridays.
