Pregnancy was the easy bit! A fairly broad statement but it was! I loved being pregnant, I felt the best I had in ages and my husband would no doubt agree after years of hormonal fertility medication!!
It was getting pregnant that was the challenge, we had been trying for many years and after being refused NHS treatment due to their strict funding criteria we took the plunge and travelled to Prague. One of the top 10 countries in the world for IVF and a successful first attempt we were over the moon!
I was so fortunate to sail through my pregnancy, I had normal scans and no obvious complications and Jack came into the world with a splash born in the pool weighing 8lb 1oz at Burnley birth centre. I thought I’d worry about labouring in the place I worked but I didn’t care less I felt safe and received amazing care!
So home we went within a few hours and my role as a mum commenced…as parents we felt completely blessed, Jack “our bubba” as we called him was so worth the wait!
Jack appeared a healthy little boy, we had a few wobbles with breastfeeding early on, and he behaved like any other newborn would…he didn’t sleep in his moses basket and we were exhausted but that’s normal right?!
Daddy went back to work and Grandma returned to Spain where she lives and I was at home alone thinking I’ve got this! Jack more or less lived in his baby wrap in a sling snug next to me, he wouldn’t be put down he started to become so unhappy….
And so it began…colic, is what we thought. It must be colic, screaming, crying, difficult to settle. That typical “tea time switch” and then the fun began, any parent knows babies are always unsettled around tea time and early evening. BUT the irritability continued despite the lotions and potions to help his digestion, it didn’t!
I guess I put on a brave face to others, cos I was a midwife right?! I’m supposed to know all about babies! Clint, my husband, probably dreaded coming home from work as Jack’s unsettled behaviour persisted. We tried all kinds and even went to an osteopath.
I then started doing what all mums do and compare. You know how it goes - you go to a baby group and everyone usually sits in a circle with their little bundle of varied ages. You weigh up the mum opposite and she looks at you and then you eye one anothers babies up, and the trend continues, it’s the norm!
I just knew, I didn’t really know what I knew, I just knew our bubba was a little bit different, and so I started using the dreaded google. I did what I tell all my patients not to do “don’t google” and there I was searching autism, eye contact, baby milestones, colic and so on….
I started observing Jack like a hawk, I wasn’t obsessed, I just had a gut instinct there was something and it was eating away at me inside. Clint, his daddy, would come home from work and I was blurting all kinds out to him about Jack’s failure to smile and slow development.
The GP and osteopath both noticed that Jack’s head was measuring that little smaller which made me even more paranoid, I waited patiently for a while thinking all babies are different and maybe Jacks being a lad and perhaps a little bit lazy. We all know boys are different to girls. Laid back like his dad I thought!
But I realised I had to do something and I was so grateful the paediatrician listened to me! Jack had an mri at 6 months old. Try and starve a breastfed baby for sedation overnight. I will never forget that day it was horrendous.
We got told our results would take 2 weeks, however the registrar, only a few hours later as Jack was recovering from the sedative effects of his medication, said that they would fast track the results. My heart literally went in my feet. I felt numb, I know how pushed the NHS is and results don’t get expedited unless something is wrong!
We were told Jack’s mri showed significant findings, he had diffused brain damage. My scream echoed up the corridors, we were distraught. We were fortunate to see the professionals within days of Jack having his mri. Hearing the words it’s possible Jack may never walk or talk will stay with me forever!
The neurologist thought his mri findings were suggestive of a virus but there was a strong possibility he could have a genetic condition with a very poor prognosis. All I could think was we can’t lose our boy, please don’t take him away from us. The blood results took weeks and it was awful wait.
We were later to be told it was likely that Jack had contracted cytomegalovirus, my husband couldn’t pronounce it let alone know what it was! CMV, I knew of but to be honest I didn’t realise the real danger of cmv and I’ve been a midwife for years.
Our precious bubba, why us, why Jack. We constantly questioned and it literally felt like our world had come crashing down around us! Time passed and we were referred to all kinds of services, and for those of you who know me can only imagine I was like a dog with a bone chasing up appointments and initial referrals to specialists!
The guilt was unreal, I’m a midwife, I have a vast pregnancy knowledge, I’ve not drank alcohol, I never smoked, abused my body in any way. I nurtured my bubba, ate healthy took my iron but I, as his mummy, failed to protect him, I as his mummy passed on this nasty virus, I caused his brain damage …me!
I’ve since accepted that it wasn’t my fault, something that’s happened, you cannot control your bodies immunity! I often say it’s a 1% chance of congenital cmv happening we’ve just been unlucky, then I look at Jack and think were actually blessed, I know how difficult it is trying for a baby and we longed for a baby!
It’s been an immense journey, as parents we’re both very positive and have lots of mottos to keep us going!
You’ve gotta keep the faith
It’s Jack’s pace
If there’s a will there’s a way
That glass is always half full NEVER half empty!
We’ve found courage and strength that we never knew existed, the impact it has on your relationship can be tough! We thought 5 years of infertility was tough but special needs parenting has proven more challenging!
You’ve got to learn to work together as a team otherwise you take your anger our on one another. It’s a grieving process for the baby you may never have, and you need to learn to adjust and learn to accept that Jack is our bubba and he may just do things a little bit differently.
Facebook can be unhealthy as it’s so easy to compare and get upset the posts of friend’s baby’s discussing first steps, first words new shoes and so on and our situation differs!
CMV has affected Jack’s vision, the signals to the brain are damaged, he is registered blind, it has caused severe developmental delay, he doesn’t yet talk, he can’t sit unaided. He has poor motor skills. He has microcephaly meaning he has a small head, problems with feeding, weight nutrition, he has multiple therapy input from OT and physio and he attends specialist development groups.
My maternity leave was stolen from me, instead of doing the mum baby things I always dreamt of I’ve spent my time ringing medical secretaries, sat in hospital waiting areas taking Jack to endless appointments.
We have learnt so much and Jack teaches us as parents every day, we have learnt to appreciate the smallest of things and we notice every achievement and have great pride in celebrating, something perhaps could easily go unnoticed in a child without such complex needs, but for us it’s a step forward.
We realise its going to be an emotional roller-coaster and we fear the future because we don’t know Jack’s ability will be nor his needs and how much assistance he’ll require. At the moment were in a good place Jack is showing good progress he is vocalising, his head control is improving and he’s full of character. He’s a happy little boy. He’s so wise and he doesn’t miss a trick! Cmv is the biggest cause of non-hereditary hearing loss but we pray the evil virus doesn’t go on to effect Jack any further, at the minute Jack’s hearing is normal.
CMV Action have been an amazing charity, they have given us endless support and are able to point you in the direction of other families and have health professionals to give advice, plus they’ve put a lot of money into education for midwives and students…If we can promote the awareness of cmv and educate parents and staff the message can get passed on - let’s try and stop cmv!