DAILY LIVING & MOBILITY

Lola & Spina Bifida

Spina Bifida (SB)

Harriett Hendry

Pregnancy

Our first scan took my breath away. There on a grainy screen was our tiny little baby that I had started to grow all by myself. Wasn't my body just so amazing! 

  Then came that phone call. The one that said we needed to come in again. There's something they need to double check. The images aren't clear enough.

  I told myself (and my husband) that it would be fine. Just unclear pictures. The doctor didn't sound worried, why should we be?

  But then the day arrived and I saw our perfect child, and they said that maybe she wasn't all that perfect. They said it looked like spina bifida. They called in a consultant. He confirmed it, he explained what it was, what it could mean. I didn't stop staring at the screen the entire time. Most of it just blurred into the background, and if my husband hadn't squeezed my hand so tightly, I might have been able to convince myself that it was just a bad dream. But it wasn't.

  He told us the options, he told us we could abort, he said we could try again and I would be given much stronger folic acid. Still I stared. I knew nothing and no one could make me give up my child. Nothing could make me hurt them. Trying again just wasn't an option, I had miscarried at 6 weeks, before they had been visible to the ultrasound, and it had felt like my world had caved in. Our baby was 17 weeks, we were nearly half way. They had their own features, you could see her nose, her legs. She was a whole person. We loved this little person so much -- we didn't want just any baby, we wanted this one.

  We cried through Christmas. We cried on and off for about 2 weeks while we fought with our inability to give up our child, and our little baby's quality of life.

  The consultant rang us. He said because of the location where the spine hadn't formed - there was a good chance the child would walk. He said her bladder might be affected, it probably would. But in terms of mobility, the child was very lucky. In simple terms, if you were going to have spina bifida, this is where you would want it. She would definitely need an operation as soon as she was born, but as there was no hydrocephalus yet, maybe not a shunt.

  So -- we declined the abortion. We declined their amniocentesis test. We decided we were going to bring our child into the world. (And she was a little girl!) We decided that we were strong enough to deal with whatever her disability threw at us.

  It wasn't fine, we weren't okay. Our baby was still due to spend the first six to eight weeks of her life in hospital. My plan for a natural birth was spoiled with the information that hospitals preferred c sections to make sure we didn't cause any more damage to her spine. Gone were our visions of daddy cutting the cord, gone were my images of having my new baby on my chest...

  Everything we had planned was now being dictated to us. Of course we complied for the health and wellbeing of our daughter, but suddenly it wasn't our pregnancy anymore.

  It was the pregnancy of countless ultrasound operators, consultants, surgeons, doctors, nurses, midwives. Everyone had to know our story, and everyone had to have their role. I was poked and pricked, my blood was taken, I was injected with steroids, countless hospital visits, delays of hours in waiting rooms, seeing the ward our daughter would be kept in, hearing the worst possible scenarios, hearing we couldn't touch our daughter while she was in special care unless our hands were 100% clean of any cells, the list went on.

But then I felt her moving, and responding to our voices. I found myself talking to her about my day, and holding her on my commute. And she was worth every breath or sterilised air I had to take. She was worth every waddle to the nurse wanting more blood from me, and every panic I had about her future. I took these jobs in my stride because I knew she would be the most perfect babe. She would be all ours, and we would do our upmost to keep her safe from the world.

  We were told during pregnancy that she would be taken for the operation straight away and because of how small she was, she would be in hospital for 4-6 weeks. We accepted that and came to terms with it. We accepted that she would be in an incubator, we accepted we would have an empty house and a commute to see her every morning. We accepted that she would be tube fed and I would have to express instead of being able to seal our bond through breast feeding. We accepted that 6 weeks of her life would be spent by her bedside while she recovered, and we accepted that we would not be granted the usual luxury of holding her without being surrounded by tubes. 

  When she was born, however, and they took her away to be checked over and prepared for surgery - the reality of what was about to happen kicked in. I felt a giant empty space inside me, I felt the loneliness of no longer having my babe connected to me physically, and no child in my arms to connect to emotionally. I wanted to scream and cry. I wanted my baby to come back to me. I missed her with every fibre of my being, and I could no longer bear the thought of having her inside a plastic box for the next 6 weeks. I needed her, and all of the acceptance and peace I had made with our decision came crashing down around me. I had thought it would be so much easier to do what was best for her medically. But my whole body ached to have her back, ached to have her close to me.

  It's like she knew. 

  My husband came into see me, his voice was shaking as he said they didn't want to do the operation yet. We can go home, just as soon as I had recovered.

  Originally they thought there would be a hole in her back which made her susceptible to infections, namely meningitis. But while the hole still existed, it was covered with skin. And then we left. Not as the two that we thought we would, but as a family of three.

  I could never describe the feeling of elation that followed. We were able to hold her and kiss her, we were able to dress her and play with her and hold her close whenever she cried. We were able to cradle her without manoeuvring around wires. I was able to happily breast feed and I didn't have to pump it out to feed her via a tube. Everything we had never thought we would do for our newborn, we had been given the green light to do. And I know there will never be a happier day in our lives than the day she was able to come home.

  But in that moment it was easy to forget that we would have to come back - that we were not out of the woods just yet.

 

Hospital

They asked us to bring her back in 6 weeks. They said to feed her and fatten her up and she would do better with the operation because she would be bigger. They said we would be in hospital for 3-7 days, they said no incubator. Naturally it seemed amazing to us, all new and naive to having a disabled child. I started planning visits to see my mum for the week after her operation.

  We arrived at the hospital on Sunday afternoon, nervous for what the future held. They tried desperately to put a cannula in and take her blood but she screamed and kicked and they admitted defeat. Her blood was taken via a heel prick and her cannula would be put in when she was under general anaesthetic. We signed their papers, we held hands tightly as the doctor read out his list of potential side effects and later reassured ourselves that they have to tell you everything, it's the law, yes, Lola would be fine.

  We left Lola in the hands of a lovely nurse and went across the road to the Ronald McDonald house to try and get enough rest to take our minds off of the impending operation. 

  The next day we headed over in the early hours to see our daughter and check that she was doing okay. Her attempts to smile at us when she saw our faces put my mind at ease, she was our little fighter, she had all the strength that I had prayed she would have. She would be fine.

  We dressed her in a gown that was the smallest size but made her look like a tiny doll in clothes three sizes too big. In that moment I thought that she was still too little, she was still too fragile to have such a huge operation. I held her in my arms as we walked to theatre. My heart felt heavy and there was an unmovable lump in my throat - but I knew I had to put on a brave face, I knew I had to be strong for my little girl, I knew that in the end we would thank the surgeons. My husband put on his scrubs, and I kissed Lola as he walked her into the room, lay her on the table, and watched her fall asleep. I stood outside clutching one of her toys, breathing in her scent and praying she would be okay, praying she would wake back up and we could go home and continue our bliss-filled life as a family of four. 

  We went for breakfast, both reassuring each other. She was in safe hands, they did this operation all of the time, she would be okay, she was a fighter, she would be right as rain. 

  And then we sat and waited. I felt sick to my stomach, I just needed a sign that she was okay, I couldn't think of anything else.

  When the phone rang and my husband answered it, I honestly thought the worst. I thought she's not woken up. I thought it's gone wrong. I thought I've lost my baby. And I nearly cried, until he caught hold of my hand. She's okay, he said. We can go and see her now.

  We raced to the hospital, I didn't really believe she was ok, I had to see for myself. And then I held her again. She was upset and confused and longing for the comfort of my milk, but she was alright. We had made it!

  They told us that they hadn't put a shunt in, because they didn't think she needed it. For those who don't know, (which is probably everyone because we didn't know until Lola was born either) a shunt is essentially a valve that sits permanently under the skin and sucks out excess fluid from a ventricle in the brain and drains it into your tummy where the stomach acid basically disposes of it. It's a cure for hydrocephalus, which they weren't 100% sure she had.

  Because she didn't have a shunt, they needed us to stay the full week to monitor her and be sure she didn't need one. By the end of the week they had realised that she would, so she was booked in for operation number two only a week after she had had number one.

  I can't really put my feelings about that situation into words. I felt joy at my baby being ok and her nerves being back in her body and not having her cry every nappy change because the sack of fluid on her back was uncomfortable. But at the same time I felt slightly deflated. In the moment I had seen Lola's little face and heard her little cry, I wanted to take her back home and let her have chance to be a 'normal' baby and live a 'normal' life. 

  But, as with every encounter with medical professionals, I told myself it would be okay. It's for the best, they said, it will help her develop properly. Without a shunt, the fluid will build up, it will cause headaches and delay every kind of development. So, it was a necessary evil, I figured.

  A day before the operation, Lola wouldn't stop crying. Her infection markers didn't show what the doctors needed it to. Her temperature kept spiking. Something was wrong. Something besides her hydrocephalus. They pricked her and took her blood until she cried herself to sleep. They couldn't find what was wrong, they said it must be a UTI, it's common in baby girls. Still, they can't do the operation if she has an infection. 

  The next day I saw her and I knew something wasn't right. She was not my happy little girl, she looked so defeated, so sad. That sounds almost crazy that a 6 week old baby could look sad, but she did, and it broke my heart.  

  Anyway, after that the neurosurgeon came to see us. They often did, to check on Lola, to see how she was getting on. This time it seemed more sincere. He said they needed to do a 'tap.' They needed to put a needle through her soft spot into her ventricle and take out fluid. This would tell us whether the infection she had was contained in her spinal fluid. We were pushed out of the room.

  He came to see us. The neurosurgeon said the fluid was going away for testing, he said it was most likely infected as it wasn't a clear colour, it was cloudy.

  They got the results back. She needed another operation. Tonight, as an emergency. They needed to insert a tube into her brain, and this would be connected to a bag. The tube would draw out the infected fluid. She would also need antibiotics, this particular strand of E. coli that had affected her, needed a course of 6 weeks.

I tried to hold it together, I really did. But I sobbed, I sobbed and I sobbed and I didn't pull myself together for a long time. All I could think about was how unfair life was. It had dangled our freedom in front of us, and ripped it away. In a cruel twist of fate, we were due to spend longer in hospital than we had meant to when she was born. 

  Again I had these feelings, she's not going to wake up, it's all going to go wrong.

  We took her down to the theatre again, we met the on call neurosurgeon, we held each other and our daughter, and wished we would wake up from this nightmare. But we didn't. Little Lola, in her gown, fell asleep under general anaesthetic for the second time in her short life. And we went for food. We went to the same place, wishing for a good luck charm. Hoping she would be okay. I could barely eat. I wanted to burst into tears. I had not prepared myself for this. They tell you everything that could go wrong, and we all convince ourselves that it won't be us.

  We did it again. We said she would be fine. But she wasn't. She woke up, we saw her, she was alive. But she couldn't breathe properly. Her voice was raspy and she couldn't cry normally. They had grazed her throat with the breathing tube, they had to give her steroids to inhale to help her breathe. The mask scared her and made her try to cry some more. My heart shattered. My poor helpless child with a tube in her brain and six weeks of hospital ahead of her. Why would life punish someone so helpless by adding more misery to her plate? 

  We stayed by her side as we walked to the ward. She started behaving differently. I spotted it and couldn't work out what was wrong. And then we were back in her room, and she did it again... She was having seizures. I remember screaming. I remember crying so loud I actually started to scream. I held onto her hand so tightly as she lost control of her body for several seconds and then tried to cry. It was all too much. My husband pulled me from the room and held me. He told me I had to be strong, that I could be strong, that she needed us to be strong for her.

  We all stayed up all night. We had nurses bringing coffee, and helping us through one of the most horrific times of my entire life. I couldn't help her, I couldn't do anything for her except be there. I was a mess, he was a mess. If there is one piece of advice I can give to you from this, it's to marry someone who you would want by your child's bedside if they got sick. The support of my husband saw me through that night, nothing more and nothing less. I could never have done that alone.

  They gave her anti seizure medicine. It was a temporary measure. They thought the seizures were being caused by the placement of the tube. It was apparently rubbing against certain nerves and causing her to fit. I held onto the hope that she might not have to live with this forever. 

  A few days later, some of my family came to London to see Lola. We went out for lunch, and received a call. Lola had fitted again, violently. They were taking her to an intensive care ward where they could monitor her more closely. They put in a feeding tube to make it easier for her to eat and breathe at the same time.  I cried. I felt like I was in a bad dream I couldn't wake up from. 

  Luckily we had some really lovely nurses on that ward. My milk had started to dry up, the nurse told me not to stress myself about it. She said that's what the hospital had supplies of milk for. She told us to go and get lots of rest. For the first time in a very long time, we slept soundly. She was in good hands, and they had so much more one-to-one care.

  We were moved from that ward pretty quickly. Which was good news in terms of Lola's recovery, as she hadn't had a fit in a long enough period of time for them to deem that the seizure medicine was working and that she was well enough to be back in the other ward.

  We had adapted quickly to hospital life. We had a routine, we knew the nurses, we knew what they needed from us and from Lola. The doctors were happy with her progress - though sometimes it felt like your whole life was on display to the dozen medical professionals that visited at any one time. 

  As we approached the end of her six week period of antibiotics, her tube fell out. As well as draining out infected fluid, they also used this to check white blood cell levels to make sure that the infection was clearing. At this point she had turned around completely. She was happy again. She had learnt to smile properly. We received big toothless grins from our little cherub. She noticed the world, she was back to being our curious, inquisitive, light-up-the-room-with-happiness little girl.

  Then they said they wanted to do another operation to put the tube back in. They wanted to check the infection had cleared. Her white cell count was low but not gone. We refused. How could you not see the improvement? She was so much better now. And they called in the head neurosurgeon and he agreed - no operation. In fact, he said, you can take her home. 

  And then we left hospital as a three again.

  We were not finished on our long road though. We had three more operations to go. The first two were to clean parts left over from the infection off of her brain. The infection had blocked ventricles and the doctor wasn't sure if we needed a shunt or if the fluid was building because of the blockages. The final operation was for a shunt.

  The thought of the shunt had made us both very nervous when we had expected it in July. But being three months down the line and having gone through so much, we had completely come to terms with it. We almost welcomed it, since it heralded the potential end to her staying at hospital. 

All three operations were a success, and we barely stayed in hospital more than 3 days after each. There were moments of panic between hospital trips. The fluid in her head didn't have anything to stop it, so she had days of having headaches and screaming at me, and I had days I had to take her to hospital just to be sure she was okay. There were midnight trips up when her head started leaking spinal fluid, many more late nights worrying, and being on the phone to the ward more than I would care to admit.      

Now

The seizures stopped when the tube fell out and the medicine was stopped. My breast milk dried up, but she took really well to formula, and I feel she is no worse off than her peers. 

Lola has her shunt, and will do for life, unless medical advances eliminate the need for it, or if she grows over 6ft and needs a longer tubing inside her. It's working well (touch wood) and is keeping her able to do things that every other baby can learn to do. 

She is thriving, crawling, learning things at her own pace. She is very stranger aware, and doesn't tend to like boys unless you are her daddy or her favourite surgeons at hospital. 

 She has physiotherapy every month as a precaution, but they are confident she will walk soon. She was late to crawling, but we put that down to losing so much time in and out of hospital and battling the excess fluid in her head. 

We check her head circumference at regular intervals to make sure her shunt is still working, and are now onto six monthly check ups with the hospital.

The months we spent by her bedside waiting for her to recover seem like a bad dream. She learns new things every day. She makes us so proud every single day.

A consultant told before she was born that she probably wouldn't walk. She is trying so hard to prove him wrong. 

Our little girl defies everything we had been taught to be true during my pregnancy. She made us believe in miracles, she made us see how possible it is to smile through every hardship, and make us feel like the luckiest two people to be chosen as her parents.

EMPOWER OTHERS!

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