For many people, the thought of talking about death and dying is extremely daunting and something that’s often avoided. But for parents John and Jenna it was a conversation they had no choice but to face when they found out that their baby boy would die young. Despite the pain, having open and honest conversations with Helen & Douglas House midwife, Kalie, they got through it together. This is the story of baby Teddy…
Pregnancy and diagnosis
On Valentine’s Day 2025 Jenna and John found out they were expecting. Their family was growing and they were overjoyed. The pregnancy progressed normally until 18 weeks when Jenna’s waters started to leak. It was at this point that Jenna’s pregnancy turned into a rollercoaster of emotions. When she got to the hospital, she was initially told she was losing the baby, however her baby pulled through but would now need close monitoring.
At the 20-week scan, doctors noticed some abnormalities with Teddy’s heart and they were referred to the John Radcliffe hospital in Oxford where a further scan showed Teddy had Tetralogy of Fallot – a congenital defect that affects the structure of the heart, and restricts growth. As the growth restriction wasn’t too big initially, the careful monitoring continued until little Teddy’s growth fell further behind and doctors pushed for Jenna to have an amniocentesis. As he was now four weeks behind on his growth, they decided to go ahead.
The tests showed that Teddy had Mosaic Trisomy 16 – a chromosomal disorder that is incompatible with life. Jenna and John were devastated. They’d never heard of Trisomy 16 before and what was worse, the medical teams couldn’t give them much more information or reassurance on the outcomes for Teddy. Monitoring continued, but Jenna was referred to Professor Wilkinson, a specialist at the JR. During this meeting, Jenna and John were also introduced to Kalie, Helen & Douglas House’s perinatal midwife. Professor Wilkinson explained that, while he couldn’t be certain, the outlook for little Teddy wasn’t promising. From that meeting until today, Kalie would prove to be an incredible confidant and friend throughout what would be a painful and poignant journey with baby Teddy.
Meeting Kalie - what she did for them
After the meeting with Professor Wilkinson, the focus for Jenna and John was making memories with Teddy. Kalie also prompted them to get a recording of Teddy’s heartbeat which she then put in a teddy bear for Jenna and John to keep as a memento.
While Teddy might survive the birth, it was very likely his time afterwards would be very short. Kalie also spoke to Jenna and John about the journey ahead, including the possibility of coming to Helen & Douglas House to make memories together, and the options available to them once Teddy was born. Jenna reflects, “I’m really glad we did that beforehand because if it was a conversation we’d have had afterwards, I don’t know what we would have done.”
Jenna, John and Kalie kept in daily contact in the weeks leading up to the birth. Every question answered, every fear calmed. Even down to talking about the dreams and nightmares Jenna would have. Kalie was there at the end of the phone to support wherever she could.
14th August started like any other day. Teddy was kicking Jenna’s tummy and she poked him back. He followed her pokes with his kicks – something that reassured Jenna he was OK. She then went to her scan appointment in Wexham and was given the devastating news that Teddy’s little heart had stopped. Alone in the scan and lost for words, all she could think about was Teddy’s little kicks just an hour before. John was at work so the person Jenna called was Kalie. Kalie dropped everything she had planned that day and focussed on going through the birth plan as Jenna would have to give birth to Teddy soon after.
Birth and aftercare - going to Helen & Douglas House, footprints and walks in the garden
Jenna’s labour with Teddy was difficult and traumatic. When he was born, the first person Jenna and John wanted to tell was Kalie. “She was away but she messaged back straight away. It was almost midnight at this point, but she had stayed up knowing that we were going in. She wanted to know we were okay.”
The next morning, Kalie was messaging Jenna and John, coordinating their next steps and getting them all to Helen & Douglas House.
“We took Teddy in his Moses basket in the car. When we got there the staff were absolutely amazing. The first person who greeted us…held Teddy and told us how beautiful he was.”
‘My Baby’ – volunteer photographers who specialise in taking memorial pictures – came quickly the next day and staff at the hospice helped Jenna with the call to the funeral directors and planning for Teddy’s funeral. On Sunday, the nurses and staff came to do Teddy’s hand and footprints – a really touching moment for Jenna. She says
“It was the first time that someone spoke to Teddy like he was still with us. They were telling him how tiny his feet were. They were apologising to him when the paint got on his leg. At Wexham we didn’t get that. But when we got to Helen & Douglas House, it was like he mattered.”
A couple of the nurses arranged for Teddy to be blessed by a priest and shortly after, the funeral directors came to collect him. The staff were all there and Kalie was too to say goodbye. “It was really difficult not to run after that van, but we all stood there while we cried and they hugged us and made us feel like we weren’t alone.”
The day after Jenna and John went back home. But their contact with Kalie continues even to this day. While her journey with Teddy was difficult, what Jenna says she remembers most is how she and the family were made to feel at Helen & Douglas House. “What we hold onto most is our time in the garden at the hospice, where we would all push the pushchair around the flowers and fruit trees. What the care team do at Helen & Douglas House is amazing. We’ve had friends who have had still-borns before and they get hours with them in the hospital before it’s over. But because of the hospice, we got more than that.
The gift of time and lasting friendship
Having more time is something that someone going through grief wishes for more than anything else. The missed opportunities, the reality of going on in life without them is tougher than anyone can imagine. Jenna said “When you lose your baby, part of you goes with them. It doesn’t feel fair, doesn’t feel right because they didn’t get a chance.”
For Jenna and John, a new chapter begins with a new baby on the way. For them Teddy will always be there as a big brother looking on among all the other babies and children who were given meaningful lives and deaths thanks to the work of midwives like Kalie and the staff at Helen & Douglas House.
Dr Emily Harrop, medical director at Helen & Douglas House, recently spoke about the importance of having midwives like Kalie working for the hospice:
“Palliative Care doctor Kathryn Mannix famously said that we live 24 hours every day with only two exceptions. The day we are born and the day we die. She urges to try to talk openly about both.
Helen & Douglas House has been offering services to parents still pregnant with babies who are diagnosed with life limiting illnesses for more than a decade. This was previously something that the medical and outreach nursing teams had to fit in as an extra part of their role, linking with colleagues in obstetrics and neonatal care.
Thanks to supporters’ generosity we are now able to employ Kalie, a specialist palliative care midwife. Kalie can give much more time for care planning, as these parents prepare for both the birth and likely death of their baby.”