Hannah

Walking into our 20-week ultrasound, we were like any other expecting parents, apart from the fact we were having twins. Walking out of the 20-week scan, we didn’t really know what was happening.  

The scan started normally. The midwife explained everything and told us all the parts while they looked at one of the twins. Then she moved onto the second child, and all of a sudden, she went quiet. This is when we started to worry. 

As she went to get a second opinion, nothing was really said to us, but we were told we would need to get another scan at an academic hospital. The wait between the scans was awful. What was only a few days felt like forever. On the day of the scan, we met with the professor who did the scan, and this is where we learned the term hydrocephalus – What was this? What does it mean? What chance does our child have? These were only a couple of the hundreds of questions going around in our heads. 

Leaving the appointment with the professor, I walked out and just cried. I still had so many questions. What did this diagnosis mean for our little girl

Throughout the rest of my pregnancy, we had weekly scans monitoring the progression, each time being asked what we would do if baby 1 died. At 33 weeks, we had the final scan and were given the date for a c-section 1 week later. 

On the day the twins were born, the doctors were shocked Hannah survived birth. She and her twin were taken to the neonatal intensive care unit (NICU). That same day, she had scans of her brain, and we were told she would need to have a shunt placed. At 4 days old, Hannah underwent brain surgery to place her shunt.

After the surgery, Hannah spent 1 night in the NICU and then was allowed to move onto the children’s ward. This was a surreal moment for us. The child we were told may not even be able to breathe on her own, had survived brain surgery, and was now leaving an incubator and moving to a cot on the children’s floor of the hospital. My girls were back together for the first time, sharing a room for the first time ever. This was an emotional day for us all as we had gotten over a large hurdle, graduating from the NICU and leaving the world of intensive care.  

As a mum, all you want to do is care for your children, and having them in the same room as me meant I was able to do things, such as change nappies, something most parents take for granted. One thing we were still unable to do was to give a bottle to the girls. We learned that babies do not develop the ability to swallow until 35 weeks, so they had an NG tube. The nurses did teach us how to feed using the tube so we could take on more of the girls’ care. This is when the real parenting journey started. 

After two weeks in the hospital, the girls were released from the hospital.  But, after just 2 weeks at home, Hannah had a complication. She was cold and pale. We took her to the hospital, where they diagnosed her with meningitis. This led to a 2-week hospital stay and subsequently 2 surgeries.  

The next year was mostly uneventful, until it wasn’t. Suddenly, Hannah started vomiting frequently and was unreactive. Every time we took her to the hospital she had come round, so we had spent 5 months being in and out of the hospital. Eventually, we pushed and asked the doctor to do a scan. It was then they found her shunt was blocked. The same day, she had her shunt replaced. Straight away we noticed a difference. 

This was 2 years ago, and our little girl is now in a normal elementary school. Although she is slightly behind in development, she is becoming a sassy little girl.  

To follow Hannah’s journey with hydrocephalus. follow me @hydromummy on Instagram where I am trying to share our story. 

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