Child: Ella, 11 months
I think my expectations were pretty realistic. I was aware of the sleep deprivation, dirty nappies and complete lifestyle changes we were going to have to make as well as the many baby related items we would need to invest in (much to Ian’s surprise!). We decided not to find out the sex until the birth. One of my biggest expectations, looking back, was to have a happy, healthy baby.
Reality of motherhood: My introduction to motherhood was a little difficult. Ella was born 3 weeks early on Friday November 26th 2010 at 6.15pm after a relatively short and very straightforward labour. It never crossed either of our minds that anything was, or could be wrong. She struggled to breastfeed after her birth, and I was given help overnight to cup feed her by a student midwife. Looking back, during that night I must have seen every member of staff that was on duty. They came in by ‘accident’, to fetch equipment or because I had pressed the call bell. Despite their differing reasons for being in the room, they all came and looked at Ella. This didn’t strike me as odd at the time, but with hindsight, I now understand why.
The next day, we received the news that Ella was displaying several features of a baby with Down’s Syndrome. Shock and devastation set in and a million and one questions immediately started racing through our heads. This wasn’t at all what we had expected. Instead of taking our beautiful girl home, we had to re-adjust our hopes and dreams and face up to a future of uncertainty.
A heart scan showed she also had a hole in her heart, which up to 50% of babies with Down’s Syndrome have. We were told this was manageable with medication but that she would need surgery to close the hole when she was 4-6 months old.
Taking your children home for the first time: Ella spent the first two weeks of her life in hospital as we tried to establish feeding. I found it a really difficult time being a nurse, who had – more importantly – just become a mummy to a poorly baby. The clinical environment was familiar and comforting (although to other parents I can appreciate it’s a very daunting and frightening experience).
Whilst we were in hospital, the nurses did a lot of Ella’s cares and Ian was cup feeding her while I expressed milk for her next feed. I felt bereft and detached – neither a mum nor nurse. I didn’t know what was expected of me and, at times, I didn’t even feel like Ella was mine. Thankfully, this all changed once we were home and I was able to properly become a mum. By this time she was being bottle fed so I was now able to be involved at feeding times too.
We took her home one cold, early December evening and I remember having palpitations the entire car journey home. At the time we were living in a 2 bed apartment in town and I had fashioned the second bedroom into a nursery in anticipation of her arrival. It was the first room we took her into and I sat on the chair holding her for ages whilst she slept, not sure what I was supposed to do next. We soon got to know her different cries, the way she liked to be held and what would soothe and comfort her.
Looking back, it was a very strange time. We were determined from the start that Down’s Syndrome will never define Ella or what she is able to do. Keeping life as normal as possible in those first few weeks at home was important to us. Having friends visit, displaying ‘new baby’ cards and showing off our baby was what we did, even if we were still dealing with shock and grieving for the baby we imagined we would have.
However, looking back the shock of it all really didn’t last for long. We fell in love with Ella straight away. After all she was still a baby. Our baby. And she needed everything that any other baby needs. Feeding, comforting, nappy changes and love. Lots of love. There are so many worse conditions or problems she could have been born with, I felt grateful we had some idea of what we were up against from the start. Other parents aren’t so lucky.
The best/worst advice: The best advice I have received comes from my own mum, who as well as raising three of her own children is also a Health Visitor by profession. I have never read, nor do I own a single baby book – ‘you can read the books’ says my mum ‘but the baby won’t have!’. I think Ella has managed to re-write all the rule books anyway and we have survived so far without them.
And, through experience I have learnt that even if things don’t go to plan, your baby will always be perfect to you. This may not have been the path we would have chosen if we’d had a choice, but I wouldn’t change the last year for anything. I can’t imagine for one second my life without Ella and for whatever reason she came to be mine, I will be forever grateful. She has taught us so much in such a short time. We have learnt a lot about ourselves as individuals and as a couple and we are a much stronger unit since she arrived. It has also made us realise and appreciate what wonderful friends and family we have.
Trust your instincts and do what you feel is the right thing to do for your baby. I weaned Ella at 17 weeks, which some of the health professionals involved in Ella’s care didn’t agree with. She was NG fed from 7 weeks old, lost her sucking ability and developed a heightened gag reflex. I knew she needed the oral stimulation in order to develop her oral motor skills needed for feeding and also speech. At 11 months she has a peg tube (which we are hoping will be out before too long), but is eating well and drinks all her fluids from a cup. She has just started to get interested in feeding herself and enjoys a variety of tastes and textures.
The hardest parts of being a mother: I would say, for me the hardest part has been decision making and the responsibility of the consequences of those decisions. Ella lost 15% of her birth weight and we struggled to establish feeding. She was unable to breastfeed and we took the decision to start bottle feeding formula and expressed milk, which she initially took well to and we were allowed to take her home when she was 13 days old. At home, feeding times became increasingly stressful and erratic as she began to take less and less, most probably due to the hole in her heart which was tiring her. Her weight remained static for 4 weeks despite being on high calorie formula. We ended up having her admitted to hospital at 7 weeks old to have a nasogastric tube inserted to feed her with. Within 3 days she was already putting on weight and this has continued ever since.
On May 12th 2011 at Alder Hey Hospital, Ella underwent open heart surgery to repair her VSD (Ventricular Septal Defect – hole between the wall of the ventricles). Her op had been cancelled twice before, so it was third time lucky. I don’t think I can explain how I felt, it’s not something that is easily put into words. For the most part, survival mode kicks in and I pretty much ran on autopilot for the week she was in hospital. Even being a nurse and working in a clincial environment doesn’t prepare you for seeing your own child, so small and vulnerable, ventilated and hooked up to noisy machines. I remember wanting to run away but knowing I could never do that to her. I could manage about ten minutes at a time sitting and watching her. I knew she needed time to get better, but waiting was the hardest thing to do. I just wanted to scoop her up and cuddle her but I couldn’t even do that. She was on ITU for two days (instead of just one) after a minor hitch that set her back 24hrs. Considering she had major surgery, she came through it very well.
After 2 days on ITU she was transferred to the ward and was discharged on day 6 post surgery. She has a 3-4 inch scar down her chest and a residual tricuspid valve leak which is being monitored. She has more energy now and has most definitely recovered much quicker than her mummy and daddy!
Following Ella’s diagnosis, I felt sure that life was never going to be the same again. This has proven to be true, but not for the reasons I worried about then. Most of the time, the worries I have and problems I have to solve are those shared by mums the world over and have more to do with motherhood than Down’s Syndrome.
The best parts of being a mother: This is a hard question for me to answer. It’s only in the last few weeks that I have really begun to enjoy being a mum (typically, just before I went back to work). I have always loved Ella and loved being with her, we just didn’t get the easiest of beginnings. I feel I am only now beginning to pick myself up and dust myself off.
One of the rewarding things about having a baby with additional needs is that you are more aware of their achievements than you would be with a ’normal’ baby (whatever that is!). The smaller milestones that may be overlooked in other children are noticed, nurtured and valued, sometimes more so than the bigger ones.
When I look back to the sleepy, floppy baby I brought home from hospital, I can hardly believe she has come so far in just 11 months. For Ella life has, until recently been more about overcoming challenges than reaching milestones. I feel very lucky that we have met some lovely people – both professionals and other families – that we would never have met if Ella didn’t have Down’s Syndrome.
There will be hard times ahead…. there are already many hard times behind us. But I already know that the good times will always outweigh the hard times. She has taught me so much in such a short time and seeing life from a new perspective is a privilege that not many of us get the chance to experience.
… Ella stays happy and healthy
… we can always be the parents that Ella deserves
… one day there will be less negativity surrounding Down’s Syndrome
… in time, I will feel ready to have another baby. I know that Ella will make the best big sister!
What advice would you offer to new and expectant mums: Babies are very resilient, there is no such thing as a routine and the first few weeks are the worst. Things will get easier! Accept offers of help, but make sure it’s on your terms and enjoy every second of your baby because time really does fly by.
Babies don’t come with an instruction manual, but you’re not supposed to know everything straight away either. If you want help, advice or answers then ask a friend, midwife or health visitor – it won’t be anything they haven’t been asked before.
Amy has a blog at: http://adifferentview-amy.blogspot.com