I want to share my story with you in the hope that should you need support, you know where to turn. When Breanna was born, she was perfect, perfect to me. What followed was a number of uncertain weeks but worst of all, the looks, the comments and the lack of understanding.
My pregnancy was classed as high risk so we were offered additional scans over and above the usual 12 and 20 week ones. During our routine 28 week check-in, the sonographer re-measured Breanna and spotted that her head was smaller than it should be. Everything else looked fine, I loved seeing her on screen and so did my husband, Kevaughn. On the same day, we were referred to a specialist where they did some more detailed checks and this is where they found that Breanna has Microcephaly.
Microcephaly is a condition where a baby’s head is smaller than expected; this can occur because a baby’s brain has not developed properly during pregnancy. The consultant explained this to Kevaughn and I and we were offered several options. Further tests and termination were presented to us, both were a straight no – I didn’t need to look at Kevaughn because I knew he supported me. Our baby was almost ready to be born and I couldn’t wait to meet her. Kevaughn was so supportive and remained positive, for us. He’s always so positive.
During the remainder of my pregnancy, I was hopeful and nervous. I wanted the doctors to be wrong, I couldn’t wait to give birth to her and prove everyone wrong. At 37 weeks, Breanna was born by c-section, and she was the most beautiful thing I’d ever seen; I was able to kiss her before she went off to NICU where she stayed for 45 days. During the very early days following her birth I noticed she was seizing, she had 10 in one go so the nurses sedated her to stop any further trauma. She also had very low blood sugar which needed to be monitored and she was being fed via a tube. I knew were going to stay here for a while but it felt like a lifetime. Those days were a whirlwind, I drove to Luton every day to see her and just be next to her. I knew Breanna was going to be a little bit different but to me that makes her even more special.
Like we all do, I started to read about Breanna’s condition online. I found that every child with Microcephaly was different. Researching gave me a baseline of what to expect but Breanna is just Breanna to me, and I really don’t want to overthink what could happen. Instead, I focus on her. I learn something new every day. She’s so calm and laid back, just like her daddy.
Since having Breanna, the hardest bit for me was not feeling like a ‘normal’ mum, what I expected was not my reality. Breanna has changed me as a person, my confidence has grown because I have to be strong but it’s also hard when I see people staring at my daughter. My experience of mum and baby groups was not great. I felt left out. I wasn’t included and people didn’t know what to say. I felt isolated, frustrated and alone. I accepted the difference between Breanna and other children so why couldn’t they?
I referred myself to Keech by completing the online self-refer form, it was easy. I’d followed the charity on social media for some time and hoped they could help me feel less isolated. Within 24 hours, one of the team contacted me and arranged a home visit. That’s when everything changed. Two specialist nurses came to my house to meet Breanna and me. They took the time to listen and really understand what we both needed.
My first hospice experience was a play session on a Wednesday. During our first session I could see that all the children had different needs. The common theme were the mums, we’re the same. We all have children with additional needs and for the first time, I felt understood. It’s a safe space for me to enjoy time with my daughter. We’ve created a really strong network (and even have our own WhatsApp group.) Something I needed, and I know that I’m a better mum because I have support from people who truly understand.
Keech has opened up the world for us as a family, giving us experiences to make the most of our time together. We’ve enjoyed days out to the zoo and farm, family photoshoots and even a race day (which Kevaughn loved – Breanna didn’t love the loud noises so much!) Our favourite family activity that Keech provides us with is a family swim in their amazing hydrotherapy pool. It’s amazing for Breanna, the warm temperature relaxes her muscles meaning she can be pain free floating in the water. She even started lifting her head as her muscles strengthened. She often falls asleep which always makes us smile. For Kevaughn and I, it’s quality time together in a space where people know, care, and understand us. That’s priceless.
Breanna is not limited to anything; she can do whatever she wants and I’ll be there to make sure she has everything she needs. Keech is there for me, so I know I’ll have the strength and support whenever I need it. I’m grateful to Keech and the network they’ve helped me create. It’s so much more than exceptional medical care – it’s the time they take to create moments for me and my family in a safe and welcoming space.
Legal notice © 2023 Keech Hospice Care, Great Bramingham Lane, Streatley, Luton, LU3 3NT. Registered Charity Number 1035089. A company limited by a guarantee. Registered company in England and Wales (no. 02904446).