14 September 2025
Meet Mariam and Devang. Their baby son Reiaan was born very early, at 25 weeks and two days, and faced a lot of challenges because of how premature he was.
Reiaan had issues with his breathing and his stomach for which he needed intestinal surgery. Reiaan then had a bleed on his brain which caused seizures and then developed a chest infection which he wasn’t able to fight. Reiaan was born on the 15th of April in 2022 and died on 29th July 2022 - his due date.
The couple and their newborn son had Music Therapy with Kirsty from Noah’s Ark Children’s Hospice on the Neonatal Intensive Care Unit (NICU) at University College London Hospital (UCLH) and Great Ormond Street Hospital (GOSH). After Reiaan died, Kirsty referred them to Noah’s Ark Children’s Hospice for bereavement support and in April 2024, the couple welcomed their baby daughter Amaira into the world.
That Moment
Devang talks about Reiaan’s birth and says: "Mariam went into labour early, and at that moment we didn't really know what to expect as first time parents when everything was already new to us. He was very premature, very little, and had quite a few uphill battles that he had to deal with. He was born at UCLH and the staff there were really supportive and tried to help us get used to the situation which was just shock."
Mariam adds: "And chaos, I was having a perfectly normal pregnancy and then everything changed. He never got to home; he was always at UCLH or GOSH in the NICU so that’s where we spent our days. I was on maternity leave and Devang was working from the NICU." Devang says of that time: "Daily life was spending the entire day at the neonatal unit with doctors coming in for different tests and checkups. We'd try and make sure that we went back home at night to have dinner together but unfortunately Reiaan was not able to come home with us."
Noah’s Ark Children’s Hospice
Mariam explains how Noah's Ark came into their lives, she says: "Kirsty from Noah's Ark was on the floor of both UCLH and GOSH and she was the one continuous part of our journey." Devang says: "As Reiaan's Music Therapist, she gave us these moments of feeling like a normal family. It’s very cold and austere in the neonatal unit with all the machines and sensors beeping but with Kirsty we got to be more active participants in his care. Just being actively involved in singing or humming to him, I think those gave us memories that we carry through to today. Music always played an important part of our lives but now even more so, and not just while he was here, but even after his death, we’ve used it as a form of communication."
Mariam says of that time: "We had a lot of family who were with us at home, they weren't allowed inside the NICU for the first couple of months, but we were able to be there with Reiaan." Devang says: "We definitely felt a lot of support from our family, Kirsty and the staff at the NICU, so in that sense we never felt isolated, as the remit of care was not just for Reiaan, but for us as a family."
Life with Reiaan on the NICU
Devang goes on to describe his son saying: "He was a very expressive boy, he had bright, sparkling eyes and for how young he was, he was very feisty and also brave. Because of how early he was born, he had lots of challenges to overcome, we still don't know where he got his strength from.
He also loved music and that was one thing that Kirsty helped us tap into. During Mariam’s pregnancy, we had music playing through the house all the time and once we were in the NICU it stopped. But Kirsty helped us incorporate music back into our daily lives, initially with humming and Kirsty softly playing the guitar."
Mariam adds: "One day he was quiet the whole day and I remember saying to Kirsty, I don’t think he’s going to want you to play the guitar today but she tried and he opened his eyes and looked straight at her, it’s one of my favourite memories of him, responding so clearly to music and being so present in the moment." Devang adds: "If he was very agitated or his pulse rate was very high, we would hum a song to him and immediately you would notice the change, not just in his demeanour but you could see it in his heart rate."
Devang goes on to talk about the support they received from Noah's Ark and says: "It meant the world, to have had those in invaluable moments with our little boy. He was only here for just over three months, and I think Noah's Ark and the support that we got from them allowed us to feel like a family, even though we never actually got to take him home with us. It's something that we've held on to even after he passed away and even till today we have a playlist for Reiaan that the whole family has access to and people add songs to it regularly, and it feels like a language between us. Sometimes I’ll be in the office, having a rubbish day and a song will come on and a particular lyric will just spark, or a particular melody will just catch my ear and I'll think that Reiaan's with me or he’s trying to tell me something and I’ll text Mariam and it immediately brings a brightness to our day. I think of it as almost two phases of gratitude to Noah’s Ark, one for the memories that we got with him and also for this connection we have now, beyond his life."
Mariam talks about the Music Therapy that they received and says: "Both of us thought he may have been too young, but Kirsty helped us break that down." Devang agrees saying: "During the first session we were saying, you’re the expert, why don’t you do it. Probably because we were so used to handing things over to the consultants, and Kirsty is a better singer than we are. But she assured us that he wanted to hear our voice and that our voices meant a lot to him. It really stands out because it was one of the first times where we were active participants in his care, felt like his parents and were actually useful."
Mariam says: "We didn’t know it was going to be finite but also we knew we were on borrowed time but we just wanted to make it through each day." Devang adds; "I think that is something Reiaan gave us, he grounded us in the present moment and made us focus on each day. One of the nurses pointed out that we were trying to project, we were asking questions about growth and development, and she told us to focus on how calm and relaxed he was in that moment, and that he was in no discomfort. That philosophy of just one day at a time is something that we really tapped into as a coping mechanism and something that has helped us deal with it."
Visiting The Ark
Devang talks about their experiences coming to The Ark: "The first time that Mariam visited, she texted me and said it’s such a peaceful place. It’s just the most peaceful and welcoming place. There was so much light and brightness, it’s really, really special. One thing that has stood out to me is the people, each and every interaction we've had with anyone at The Ark has been absolutely exceptional. The support we get from them is one thing, but we also feel a real connection with them, they're so kind and you really feel heard and cared for."
Mariam agrees and says: "It’s a space where we could be ourselves and where we didn’t have to explain our grief in any way. I think we've realised there are people who get it, and people who don't, The Ark is filled with people who deeply get it. It means a lot to us to be able to talk about Reiaan and not have the room go silent. I’ve also met other mothers who have lost children around the same age as Reiaan and that's been good to have support from them."
Devang says of the support they’ve received from Noah’s Ark: "It’s such a unique and specific journey that we've been on. Having people who understand it, who know how to speak about it and how to guide us through it has been incredibly valuable. There’s also the more practical support, having therapy sessions with Carys [Noah's Ark Bereavement Manager] and interacting with other parents or just coming to The Ark to have a meal. There is such a wide variety of support on offer, it’s not a one size fits all approach, you can choose that works for you. There’s also the physical space, it’s not far from the hustle bustle of London, but it’s such a calm and serene environment, it immediately helps change your perspective."
Moving with their Grief
Mariam adds: "Noah’s Ark has moved with us through our journey of grief and been there in the quieter moments of grief or when we want to be grateful for his life or celebrate him and also supporting us through having Amaira."
Mariam talks her about the arrival of their daughter, she says: "When I was pregnant with Amaira, I leaned on Noah’s Ark a lot because I was so scared that I would go into labour, because we still don't know why Reiaan was born so early."
Mariam talks about where the couple are now and says: "Noah’s Ark gave us the space to figure out how not to hang on to the anger or the sadness, which is not to say we don't feel it, but we don't hold on to it. We make sure we lead bigger and fuller lives because of him. We’re really grateful to Noah’s Ark for helping us to find our own path through our grief."
Mariam adds: "Noah’s Ark has also given us the ability and the licence to feel gratitude about our experience. Most people don’t understand why we’re grateful, they do when we explain it to them, but Noah’s Ark just get it."
Devang sums up by saying:
"We feel like changed people for having met Reiaan and want the world to be a richer place because he was in it and for that to be his legacy. Noah’s Ark gave us moments as a family with Reiaan we otherwise wouldn’t have had and have allowed us to live a life that Reiaan would be proud of."
Reiaan - 15 April to 29 April 2022.
With grateful thanks to Mariam, Devang, Reiaan and Amaira for allowing us to share their story.
You can find out more about our From That Moment fundraising campaign here.
