Edith was born at 31 weeks via an emergency C-Section and is one of identical triplets.
Unfortunately, due to prematurity, she suffered a brain bleed.
This bleed was found whilst she was in the NICU. Edith had two spinal taps but, due to the bleed blocking the ventricles, the pressure in her skull built up and the taps did not work. So, a decision had to be made quickly to relieve the pressure.
A neurosurgeon and a specialist nurse came to speak to me and explained that we needed to decide quickly. They recommend a subgaleal reservoir, until Edith was big enough for a shunt. It all seems like such a blur, but I knew we had to act quickly to limit brain damage.
Edith’s hydrocephalus didn’t self-resolve and, when she was two months old, she had a VP shunt inserted. The neurosurgeon told us to expect physical and/ or mental disabilities due to Edith’s brain bleed, but that there was also a chance that she will develop normally. At this point in time, Edith began weekly physiotherapy.
Edith’s shunt has blocked three times so far. We live in Guernsey so, each time this happened, she had to be flown by emergency plane to Southampton hospital.
The first two times her shunt blocked, her head circumference grew by 2cm in a space of a few days. Edith was vomiting, and she was sleepy and irritable. Since then, I have taken her to the hospital twice due to vomiting and irritability, but there were thankfully no concerns about her shunt. When she had her third blockage, Edith unfortunately had a febrile seizure. She was intubated and sent to Southampton hospital. Edith was drowsy, off food, but not vomiting, and they discovered that she had metapneumovirus. Her head size hadn’t grown; however we were told that this was because her soft spot had healed over. The clinical team attempted a tap of her reservoir, but got nothing back, and they decided to operate.
Managing Edith’s hydrocephalus in Guernsey has been made so much easier by having her hydrocephalus specialist nurse based at Southampton. I text Edith’s measurements to our nurse and am able to text or call her with any concerns.
There are no specialist neurosurgeons/neurologists based in Guernsey and this initially scared me, as two of our triplets have neuro problems. But it has taught me to be stronger and go with my gut. If I’m ever wrong, swallowing a bit of pride is better than risking not speaking up and my daughters not getting the care they need.
The best bit of advice I was given was to treat Edith like a normal kid. I was so scared that I would ‘break her’ or do something to block or break the shunt. But, now, she plays with her sisters, does everything they can, and she has been absolutely fine.
My proudest moments are watching Edith every day and seeing how determined she is. Edith had a left-sided weakness and, for a while, she would not turn her head to the right due to the shunt. I was so concerned that she would have these issues throughout life but, with the help of her physio and her own determination, she built up her strength and is now as mobile as her sister.
Edith is the sassiest little girl, with the cheekiest smile. She has come so, so far from the 3lb 1oz baby born with hydrops, jaundice and a brain bleed.
It gets easier and they will amaze you every day. Remember that it’s okay to not be okay, and that talking to families in similar situations helps.
