Tulsi's Story

Tulsi was diagnosed at our local hospital at my 20 week scan. It was an emotional moment; I hadn’t even heard of spina bifida before. As a mother it was so difficult, we were told our baby girl might be paralysed, need a tube in her brain to relieve pressure or, worse, not survive.

Every time we had a scan, the lump on her back got worse. It was scary, and I tried to learn more about the condition and picture what life might be like for her.

As Tulsi grew, we found out that her right foot and the nerves in her legs weren’t developing properly, and the lump on her back was getting bigger. But we made sure to focus on the positives. Our spirituality gave us strength, and our brilliant consultant was determined to get the best care for our baby when he arranged a referral to Great Ormond Street Hospital (GOSH). We first came to GOSH while I was still pregnant. We met a spina bifida specialist named Dr Tahir, who told us Tulsi’s best chance at life was to have delicate spinal surgery within hours of being born.

He walked us through what would happen, but I couldn’t follow what he was saying. All I could think about was how fragile Tulsi would be. 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.

Tulsi was born at our local hospital in Northwick Park in Harrow and then taken to GOSH for treatment. When she was born, we had to be so careful, we couldn’t hold her.

At just a day old, she had eight hours of surgery. After two days, we were finally able to hold our new baby girl. We had the best doctors looking after her and they saved my daughter’s life.

She recovered in hospital for two months, and during that time I barely left her side. The doctors and nurses at GOSH were so supportive, encouraging me to take care of myself so I could care for Tulsi. I wasn’t sleeping in the hospital, and I wasn’t coping. The nurses made sure I had a room to rest in and insisted I got a good night’s sleep, which gave me enough energy to get through until Tulsi could come home.

Unfortunately, not long after returning home, Tulsi’s wound became infected, and we were back to square one. She needed to return to GOSH for a second operation. While I was alone with Tulsi at GOSH, my husband visited us every day and our other two children, Radhika and Paarth, came twice during their summer holidays. It was nice for them to see their baby sister, but I didn’t want them spending too much time in hospital. It wasn’t easy being away from my family; it was heart-breaking not being able to be in two places at once.

After recovering from her infection, Tulsi has gone on to thrive. She’s five now and loves school. She is a burst of energy. She’s so strong, and it’s been remarkable to see her overcome so much trauma.

For a few years she went back to GOSH every couple of months for a check-up, and the doctors still keep an eye on her back, brain and bladder. We know she’ll face challenges, but we’re not focusing on the negatives. We see her for who she is, and not for her physical difficulties.

The biggest thing we must think about is changing her catheter every three hours and keeping infections at bay, but it’s part of our routine now. You wouldn’t know there was anything wrong with her, although she has to use more energy than other children to keep up. We spot the signs when she is getting unwell and know what to do.

This summer we took her for a day out without her pushchair. We usually take it everywhere in case she gets tired and needs a rest, but we went to a theme park and she managed the whole day walking and playing. Her health has been amazing. She does everything that her brother and sister do and as parents we treat them all the same. We call Tulsi our miracle baby; she has beaten the odds. We take comfort in the fact that she’s in the very best hands at GOSH. There are no words to describe the consultants, they are world leading.

It’s incredible what these doctors can do, and science moves on all the time. Now there is a new option for parents facing a diagnosis like ours – a new spina bifida surgery at GOSH that repairs the baby’s spine while still in the womb. It’s just fantastic. It gives families another treatment choice, which is so important.

When you’re receiving so much bad news, it’s really encouraging to hear that with surgery, your baby will survive, that they’ll smile, have their own unique personality, maybe walk and lead a near enough normal life.

We have spoken to other parents expecting children with spina bifida, an opportunity that we ourselves did not have, and shared Tulsi’s story. It has given them hope. Parents can rest assured that their children will get the best treatment and care in the land from the medical staff at GOSH.

A team from Great Ormond Street Hospital (GOSH) recently became some of the first to carry out pioneering surgery to repair the damaged spinal cords of babies in the womb.

Dozens of babies with spina bifida have so far been spared paralysis and other life-limiting conditions thanks to the breakthrough treatment.

Babies with spina bifida have gaps in their spines where the spinal cord and surrounding vertebra don’t form properly. This can cause changes in the brain, as well as severe injuries to the nerves.

The new surgery requires an experienced, multidisciplinary team, and involves exposing the foetus while the mother is under anaesthetic – similar to a Caesarean section. The neurosurgeon cuts around the exposed spinal cord, which is protruding through a hole in the back. After putting the spinal cord back into the spinal canal, a protective tube of muscles and skin is created around it to prevent spinal fluid from leaking.

“Closure in the womb is an alternative to postnatal surgery and improves short- and medium-term outcomes,” GOSH lead neurosurgeon Dominic Thompson says. “While neither intervention is fully curative, in foetal surgery, the defect is closed earlier, which prevents damage to the spinal cord in the last third of pregnancy.” The surgery is available in the UK thanks to charitable funding totalling £450,000 from Great Ormond Street Hospital Children’s Charity (GOSH Charity) and University College London Hospitals Charity. The funds facilitated research and provided training for the surgical team through collaboration with colleagues at KU Leuven in Belgium.

It will give babies a significantly better chance in life, as people with spina bifida are very often incapable of walking and may require a series of operations to drain fluid from the brain (known as a shunt placement) later in life. The National Institute for Health Research (NIHR) University College London Hospitals Biomedical Research Centre, the NIHR Great Ormond Street Hospital Biomedical Research Centre and UCL Great Ormond Street Institute of Child Health (ICH) are also supporting the research.

“The groundbreaking work … wouldn’t be possible without funding from GOSH Charity,” Dominic Thompson says.

“For many children treated at GOSH, research offers them hope. Thanks to many generous supporters, GOSH Charity is now the largest dedicated funder of paediatric research in the UK, investing funds to help discover new treatments and cures for children with complex and rare conditions.”