Patient StoryTulsi

Tulsi's story at GOSH

Tulsi was born with spina bifida. While she was developing inside her mum Laxmi, she developed a defect that meant her spinal cord did not form as it should, leaving a hole in her spine and sack of spinal fluid exposed on her back. Her mum Laxmi shares their story...

“I was first told that something was wrong at my regular 20-week pregnancy scan. My unborn baby had spina bifida -- something I had never even heard of before. After every follow-up scan and MRI, things seemed to be getting worse. Not only did she have this condition, it was the most severe type called myelomeningocele. I tried to stay collected as we were told that my baby would be paralysed, need a shunt in her head, and worst of all, that she might not survive.

“That’s when I was told that I had the choice of terminating my baby. It was awful. That wasn’t even a choice for me. I would have never done that, and I was shocked to hear that many women do. At that point, we didn’t want to hear anything else. We were going to have our baby and we’d deal with whatever came our way. Fortunately, as soon as we made our position clear, our doctor ensured us that he was going to make sure we got the best care.

“Then as Tulsi grew, we found out that her foot didn’t develop quite right, the nerves in her legs weren’t developing properly, and the lump on her back was getting bigger. With every scan, my heart would drop a further down. My husband on the other hand, was positive throughout my entire pregnancy. Every time I questioned what I was going to do and how I was going to manage, he kept reassuring me and tell me to have faith in God.”

Delicate, life-changing surgery at GOSH

“We first came to GOSH while I was still pregnant. We met a spina bifida specialist named Dr Tahir who told us that Tulsi needed to be operated on as soon as she was born. He walked us through exactly what would happen during the procedure to close up her back, but I couldn’t follow what he was saying. I felt like I couldn’t breathe. All I could think about was how fragile Tulsi would be. I thought I was going to lose her before she was even born.

“Then when I was eight months pregnant, we had an MRI scan that gave us a bit of hope. It was so amazing. The scan showed that Tulsi was kicking inside me. Having been convinced that my baby would be paralysed from the waist down, it was such a positive sign to see her moving around. We held onto that, right up until I had her.

“Within less than 24 hours of Tulsi being born, she was rushed to GOSH and brought into the operating theatre. At this point, I had only held her once and it would be 8 hours of surgery and two days of recovery before I could touch her again. It was terrible. Even when she was back with me, I struggled to care for her. She had so many wires coming out of her, so I couldn't feed or cuddle her. I couldn’t do the things, as a mother, I needed to do to protect her.”

Unexpected support at a difficult time

“Unfortunately, after the first surgery, Tulsi got an infection. When we returned home, Tulsi’s wound became infected and she needed a second operation – we had to go through the whole thing all over again. Immediately after her second surgery, she was transferred to the Pediatric Intensive Care Unit (PICU) until she was strong enough to move to Koala for children with spinal, neurological and other conditions. I stayed in her room, by her side, for the whole five weeks.

“The ward staff encouraged me to go, to take a break, but I didn’t have the heart to leave. I spent so much time worrying about Tulsi – who would feed her, change her, bathe her – that I forgot to look after myself. I forgot that I had just given birth and that I needed to recover as well. But I wasn’t sleeping, and I broke down. That’s when a few fantastic nurses swooped in to help. They told me to go to the mum’s room for a good night’s sleep without beeping machines, and they took over looking after Tulsi. It was exactly what I needed.

“While I was alone with Tulsi at GOSH, my husband visited us every day from morning to evening and my other two children came twice during their summer holidays. It was nice for Radhika and Paarth to see their baby sister, but I really didn't want them spending too much time in hospital. It was difficult for them seeing Tulsi like that and I wanted them to enjoy themselves before school started. But it wasn’t easy being away from my family. It was heartbreaking not being able to be in two places at once.”

Coping with a one-of-a-kind baby

“We’ve been home from GOSH for 18 months now and having Tulsi has really been a game-changer. Even though I'd already gone through being a new mum twice before, I had to learn a whole new way of looking after a baby. For instance, I couldn't hold her like my other two children, change her nappy in the same way, or lay her on her back to sleep. I also had to care for her like the GOSH nurses did, to make sure her head wasn’t swelling and her wound was looked after.

“So many people take good health for granted and you don’t realise things like this happen until it happens to your family. And how you deal with them is different for everyone. It took me a long time to come to terms with Tulsi’s diagnosis. I blamed myself. I had no idea that a lack of folic acid before conception was a key factor in causing the spina bifida. I’m not sure many women do. But after speaking to other mums, I’ve realsied that it wasn’t my fault and that Tulsi has a bright future.”

What the future holds

“Even though Tulsi has healed, she still needs to be monitored for the rest of her life. She comes back to GOSH regularly to have physio, her brain and bladder scanned, and her back and the sensation in her legs checked. But Tulsi is doing really great right now. She's been like any other baby. The surgery has meant that I can finally enjoy her – that was until she started teething! She’s started crawling and standing up. She loves going play groups and visiting her nan.

“We know that Tulsi will face challenges, but we’re not focusing on the negatives when she's doing things, we never expected her to do. We're no longer afraid of all of the things that we were warned about and read online. When we look at our daughter, we see her for who she is, not that she has physical difficulties. I think she’s so strong, and it’s been remarkable to see her overcome so much trauma.”

Spina bifida fetal surgery gives families hope

“When we found out that Tulsi had spina bifida, we heard that doctors in other countries were repairing the spine while the baby was still in the womb. We considered travelling abroad for the procedure, but I didn’t want to risk it when it wasn’t available in the UK. To hear that Dr Thomspon is now doing it at GOSH is just fantastic. The science and the fact that it can increase the child’s chance of walking is so inspiring and extraordinary.

“Having an alternative to postnatal surgery means that families have another option when they’re told their child has spina bifida. And feeling like you have choice in your child’s treatment is so important. When you’re overwhelmed with so many worst-case scenarios with how your child might be affected, it’s really encouraging to hear that with the right surgery, the baby can survive, smile, play and even walk. This new procedure gives families hope at an otherwise very dark time.”


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