Shanan's Story

News of a High Risk Pregnancy

There was more news to come as Shanan explains: “The nurse kept on scanning, and I thought something seemed a bit strange as it was taking so long. She called for someone else to have a look and it was explained to me that there was a possibility that the twins were identical and sharing the same sac and that it was a high-risk pregnancy. All I remember from the journey home was thinking I must be so careful. I started thinking about whether I could carry them full term and started researching and examining the risk.”

Shanan was booked in for a scan the following week at University College London Hospital (UCLH), she says: “It was at that stage they said the twins were identical and sharing the same placenta but not the same sac.” Twins with separate amniotic sacs but a single, shared placenta are known as Monochorionic Diamniotic (MCDA) twins. They account for roughly 70% of identical twin pregnancies and require close monitoring due to risks like Twin-to-Twin Transfusion Syndrome (TTTS). Shanan explains: “It was a relief knowing that they weren’t in the same sac, but the pregnancy was still high risk as the babies were sharing the same placenta, so there was still a possibility that I could lose one or both babies. Throughout the whole first stage of the pregnancy, I was running on fear, fighting with myself not to engage in any personal stress, to protect the babies. It was like carrying an egg on a spoon. I wished the pregnancy could be over quickly and that my body wouldn’t fail me.”

Twin-to-Twin Transfusion Syndrome

Shanan was then told during her 16-week scan that one of her twin girls needed to put on weight and wasn’t doing well. Shanan was told that this was due to Twin-to-Twin Transfusion Syndrome (TTTS), which is a serious condition in identical MCDA twins where the blood flows unequally through shared placental vessels. Shanan says: “I was told that they might need intravenous surgery to help the baby that was struggling or if that wasn’t possible, they could try to save the stronger baby by terminating the other one. That just wasn’t an option for me, it would have been too painful.” During this period Shanan made extra efforts to safeguard the pregnancy. Shanan says: “I felt I had to put extra love on the left side, I would lie on my side and talk to her, trying to connect with her individually while not leaving the other baby out. Due to the stress, I lost a lot of weight. I started eating differently and healthily, trying to nourish myself and the babies.”

At week 27, Shanan was told that the weight of the baby that was struggling was increasing. Shanan says: “27 weeks was the highlight of my pregnancy, it was my happiest week, the only happy week to be honest. Things started going downhill from there and became a trauma that I’m still trying to deal with.” As things seemed to have stabilized, Shanan was referred back to her local hospital, which she had reservations about, she says: “I just didn’t think that they were equipped to deal with this type of twins. The next scan I had there took a very long time and the sonographer looked worried. I was told to attend the hospital day unit to be on the safe side but reassured that everything was fine. I just knew by instinct that something wasn't right. When I saw one of the consultants in an empty room, I went in and told him I was worried. He agreed that something didn’t seem right and booked me another scan at UCLH for the next day.”

Delivering Twins

Shanan is grateful to her intuition as it was during this appointment at UCLH that she was told that one of her twins had a mass on her forehead. Shanan says: ‘It was such a big mass on a tiny baby’s head, and I was worried that she might have been in pain. At the time they thought the mass was benign. It contained blood vessels, but they weren’t attached to anything that could rupture during a natural delivery, but they said the safest option was still a cesarean section (C-section).” Shanan had only ever experienced giving birth naturally. She says: “I’m scared of operations, but it was the only option, I had to get over my fear for my babies. I went in for the C-Section with my mum as I needed that maternal support.”

Baby Amelia was born first on the 15th February 2023, quickly followed by baby Amaya. Shanan says: “The stronger baby, Amelia, was delivered first and she had a few spots on her skin. Then they delivered Amaya, the twin with the mass on her forehead and I didn't hear her cry, and she was quickly taken away. After Amaya was delivered, I felt completely empty, I don’t think I'll ever forget that moment, I was really emotional, but I couldn't cry. It was also a happy moment as I was with Amelia, but all I could think about was Amaya. I only had five minutes with her before she went to GOSH. I didn't want to let her go and I hoped she knew that I was her mum.” Shanan relied on her own mum for support during her recovery. She says: “My mum took care of me; she was a super mum. I couldn’t have imagined anyone else being with me.”

A Rare Cancer Diagnosis

Shanan followed Amaya to GOSH the next day with Amelia staying at UCLH until she was also moved to GOSH where the twins were both diagnosed with Undifferentiated Pleomorphic Sarcoma (UPS) which is a rare, aggressive, high-grade soft tissue cancer. Amaya’s cancer was more advanced and had spread to the majority of her organs while Amelia only had a few lesions on her body and a hole in her liver. Amaya underwent surgery, a blood transfusion and had a Hickman line (to provide direct access for chemotherapy and blood tests to avoid repeated needle punctures). Clinicians waited to see if she was strong enough to start a course of chemotherapy, but she never was and Amaya died on the 27th February 2023. Shanan says: “It was the hardest decision, to turn Amaya's machine off. Afterwards, as I sat beside her body, I went numb; I couldn’t feel anything.”

The night Amaya died, her sister started chemotherapy. Shanan says: “I felt I had to get stronger for Amelia. We had her at home for a week and that was the first time I really felt like her mum. One day, she wouldn’t stop crying and her next scan showed bleeding on her brain. She was never the same after her brain surgeries, sensitive to touch and in more pain. It was breaking my heart because I couldn’t do anything to soothe her, which made me feel inadequate. I was breaking inside.”

Sadly, Amelia died less than two months after her sister on the 18th April 2023. Shanan says: “That was the second time I had to make the decision to turn off my baby’s machine. When she died, I fell to the floor, asking the nurse ‘How do you lose two babies?’ I just wanted to go home. I didn't want to spend another minute at the hospital. I wanted to see my other kids and feel like a mum again.” 

The doctors at GOSH explained to Shanan that the cancer had most likely been transferred from Amaya to Amelia. Amelia, sensing her twin wasn’t doing well, shared some of her blood supply with her sister, and it was during this process that Amaya’s cancer cells transferred to Amaya. Shanan says: “It’s like a miracle really. Amelia knew her sister was struggling and wanted to help her out. I'm happy that she did that, she sacrificed herself so I could meet her sister.”

An Introduction to Noah's Ark

Shortly after Amaya died, Shanan was referred to Noah’s Ark Children’s Hospice from the Bereavement Team at her local hospital. Noah’s Ark assigned Shanan a Family Link Worker, Maria, who helped to plan the funeral, even helping to pick outfits for the girls. Maria has been a source of comfort and support for Shanan, who says: “She's been my rock. I don't know how I would have been if it wasn't for Maria and Noah's Ark.”

Shanan also receives Bereavement Therapy from Noah’s Ark, she says: “At the start I felt like I didn’t really need therapy as I was so numb, I had no idea how the loss of the twins was going to affect me, so I stopped having it. I started again around the first anniversary, my grandma had cancer and passed away and work was stressful. I felt like I couldn’t control anything in my head and I locked myself away from everything. Therapy helps me to balance things out and guides me away from depression.” Shanan goes on to reflect on the guilt she felt, as though she had somehow failed to bring the twins into the world in good health. She says: “That thought was slowly swept from my mind after I started my counselling and therapy that gave me a safe space to process my grief and I began to heal. It helped me find strength in those days when I felt at my lowest.”

Support for the Family

Noah’s Ark also supports Shanan’s other two children, Skye, aged 7 and Ayden, aged 11, through dedicated siblings’ groups. Shanan says: “I don't know where I would be if I didn't have Noah's Ark helping and supporting the kids. They’ve taken them on outings and given them opportunities to smile again, surprising them with thoughtful gifts that brought light back into their lives during such a dark time. Seeing them happy, even for a moment, meant everything to me as a parent. We were also lucky enough to have an amazing trip to Disneyland Paris; it’s something we will treasure forever. It gave us a chance to step away from our pain, create special memories together, and feel joy again as a family. That experience meant more than words can express and I’m forever thankful for the opportunity.”