Hi, I'm Jane and I'm fundraising for my granddaughter Delilah. She is 4 years old, she was born with Spina bifida and hydrocephalus. Delilah needs intensive physiotherapy to ensure it maximises her chances of being able to walk.

This is Deliahs story written by Holly, Delilahs Mummy.

As many of you may know Delilah’s journey so far hasn’t been the easiest. When Delilah was 21 hours old she went down to theatre to have spinal surgery. This took a very long 8 hours and I can definitely say this was the longest 8 hours of our lives. Because of the spinal surgery, Delilah had to have a blood transfusion because she was anaemic and wasn’t able to lay or put any pressure on her back for a couple of weeks.

Four days later the neurosurgeons said it was time to take her down to theatre again to place her VP shunt to drain the fluid off of her head to release pressure and stop her head from getting any larger due to the hydrocephalus. The operation went well but it was a waiting game after to see if it had worked how they would have liked it to.

Delilah then got discharged from Nicu and got transferred to the neurological ward to be closer to the neurosurgeons.

This was a big/scary step for us because in Nicu the nurses do everything and we had very little input. We were trained by the nurses on how to feed Delilah through her NG tube, Catheterise her and change her back dressing for her wound from the spinal surgery.

We met a lovely surgeon called Dr John who did Delilah procedure of fitting a Hickman line to be able to gain access to her bloods and to give her antibiotics. This was more of a simple procedure than her VP shunt operations but every time we had to see Delilah be put under GA was very tough and never got easier.

After a few tests, we found out Delilah had an infection in her VP shunt. This meant she would need an operation to take the shunt out so she could have antibiotics to treat the infection. While they were operating to take the shunt out they did a procedure called a ETV to help drain the fluid while the infection was being treated and to hopefully not have to have another operation to put the shunt back in. The operation went well but we had to wait and see whether the ETV would work and whether or not she would need another operation.

At week 9 we had the amazing news that we could take our baby home for the first time. It was a huge moment for all of us but unfortunately, 4 days later Delilah had a CSF leak from her wound as the pressure build up too much. We went straight back to the hospital where we stayed for a week which included a couple of procedures to keep her comfortable and an operation on her brain to put her VP shunt back into place.

We then got discharged for the second time. Unfortunately again we only spent two days at home before having to get blue-lighted to kings college hospital as she had another CSF leak from the wound of the previous operation. The wound got glued and then we were sent home 4 days later.

Two days later the same wound started leaking and was rushed to kings college hospital by blue light, you could see the skull of her fontanelles due to the amount of fluid that had leaked and they were really worried about her. She had an emergency operation to take the old shunt out and put a whole new one in. When they did this her chest collapsed twice which meant she started de-stating. On the third go, they was suggesting but wanted to keep an eye on her. After two weeks we got discharged.

We managed to have a little longer at home this time around. During this time we were learning all about Delilah and her medical needs. We also had a lot of appointments to attend as a lot of people needed to meet Delilah for the first time and to start getting to know Delilah etc. Some of these appointments were in London, locally and at home.

After three weeks of being at home, we had to take Delilah to Southend hospital as she had bronchiolitis and had to be put on oxygen as her oxygen levels were decreasing. They thought she had a blood infection and they were worried it would travel to the shunt which would have meant another two brain operations. We got transferred to King's college hospital as they couldn’t do anything else for her. Once we got there they contact kings to let us know it was contaminated and she didn’t have a blood infection. As she was still on oxygen we still had to wait until she was strong enough to breathe by herself so that we could go home. After spending a week in the hospital we were able to go home just in time for Christmas. We were so pleased to go home as we didn’t think we were going to be able to spend our first Christmas as a family at home but we managed to make it happen.

Unfortunately, Delilah then had two more shunt malfunctions. One was at the end of January and the second one was at the end of July. They were both caused by blockages in the valve of her shunt. Delilah never seems to surprise us with how well she bounces back after such a major operation and gives us attitude as always.

We take every day at a time with Delilah as at any time we may have to make an unexpected visit to the hospital with no warning. We are grateful for every day that we have at home as we have experienced how precious time can be.

This has taken a huge emotional and physical strain on Delilah’s family but seeing Delilah improve every day and with every physio session, it really helps us get through the bad times and start to focus on the good.

Due to Delilah’s spina bifida, Delilah doesn’t have the mobility from her waist down as other children do. This makes anything physical very hard for Delilah and she needs extra help to build up the muscles that got damaged due to the spina bifida. Delilah also has difficultly physical because of her hydrocephalus. Hydrocephalus is a neurological disorder caused by an abnormal buildup of cerebrospinal fluid in the ventricles (cavities) deep within the brain. This has resulted in Delilah having a very large head and she has to work extra hard to hold and have good head control.

It is so important to us that we do everything possible and in our power to be able to give Delilah the future she deserves and the mobility that she could have.

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