So here’s our story – I’m from the UK.
I fell pregnant with my first baby back in 2015, I was over the moon everything seemed to be going fine and smoothly until my 20 week scan. I was just looking forward to find out whether I was having a little girl or boy, my instincts were saying girl.
However at this appointment we didn’t find out, but we were told our baby had an echogenic bowel, me and my partner had no idea what this meant. So we were sent off for a series of tests and that’s when we found out I had a CMV reaction. Again, another load of words thrown at us which we didn’t know what they meant. From that point onwards we were constantly scanned and tested, sent to various specialists. We were offered an amniocentesis at 26 weeks but we weighed up the risks and what we would gain and decided not to go with it.
5 weeks before my due date I went into labour and without any dramas my little girl was born. She had a pectoral rash, treated for jaundice, flooded with medication, scans, blood tests, lumbar punctures, and spent her first week in the world predominantly in NICU. She was small at only 5lbs, but was strong and so so content. We then had her newborn hearing test, which she failed…. I wasn’t surprised but I still felt devastated. We were then sent for a full hearing test which we found out she had severe/profound bilateral sensorineural hearing loss. Again absolutely devastated.
Seren was treated with oral antiviral medication, which gave her constant reflux and made her colicky, after persevering for 3 almost 4 months on it, I just couldn’t handle the side effects it was having on my baby girl. So with the support of the specialists, we decided to stop it. I also made the decision to wean Seren onto solids early as well because of this.
Seren received her first hearing aids at 11 weeks old, we were to try them for a minimum of 3 months before they decided to refer us for CI. She’s now nearly a year old and we’ve had such a real challenge with her ears, she has very small canals, she’s had grommets fitted, a series of ear infections, one of which resulted in a perforation before I was taken seriously at the doctors! We’re still going through the process of assessment for CIs as well.
Seren cannot speak but has a range of sounds. She’s got gross motor delay so is not able to sit unaided but can roll like nobody’s business! She’s so happy & content. She’s under more specialists and therapists that I can remember or count yet nothing phases her. She attends a mainstream nursery who are fantastic with her and also attends a disability crèche. She is the only deaf member of our family also. She’s incredibly curious, mischievous and spends so much time analysing things and her fine motor skills, problem solving, etc. are amongst, and in some cases, advanced of her peers. Her vision is presently unaffected also. She does have 2 cysts in the frontal lobes of her brain, and also some other minor differences in her brain.
I won’t lie it’s devastated me, I blame myself wholly for what’s happened to her and will never forgive myself for that. But it doesn’t stop me protecting her, wanting the best I can possibly give to her, helping her access the world as fully as she can and being the best she can be and also treating her as any other child.