Monika and Isabelle

Name: Monika  

Child: Isabelle, 2 yrs (Schmoo2 is due in May 2012) 

Location: Manchester.

Expectations of Motherhood: I was really lucky as I have 2 younger sisters and also some very close friends who had babies a while before I did. As a result I think I was a lot better prepared for what was to come than many of my friends. I was expecting to feel exhausted beyond sanity and I was expecting to miss being spontaneous for example. I'm really pleased I did 'know' that was coming, as otherwise I think that would have been a real shock.

I always knew I wanted to be a mum but that I'd like to start around the age of 30. I never wanted to be a young mum, which some of my friends really did. I was very lucky to meet the right man when I did, which gave us the chance to be together as a couple for a few years without the added pressure of feeling the biological clock ticking. We both felt ready for parenthood at the point we decided to try for a baby.

Reality of Motherhood: I hadn't expected pregnancy to be quite as hard as it was. With my first pregnancy I bled a lot in the first few months, and so had several trips to the hospital thinking I was having a miscarriage. The emotional exhaustion of this seriously took its toll on me. I was also sick every day for about 20 weeks, and I remember at times consoling myself when lying on the sofa with a bucket in my hands that the sicker I felt the more pregnant I must be! I remember being so dizzy that I couldn't stand up in the shower, and wasn't safe to drive anywhere. That experience made me wait longer than I perhaps would have to try for a second baby as the idea of dealing with all of that while looking after a child was daunting to say the least.

The rollercoaster didn't stop there. At 16 weeks we had the blood test to check for downs, and I vividly remember the phonecall that came telling us we were 'very' high risk. Our 'numbers' came back as a 1 in 50 chance of our baby having downs, which was a real shock. I hadn't expected there to be so few answers for us. I knew that I didn't want an amnioscentesis, and yet that was all the midwife was able to talk to us about. There seemed to be so little information about how that statistic was arrived at and what might affect the numbers, or how they know the difference between the 5% false positive result, and what would be one of the 49 babies without downs. I felt very vulnerable at that time and unsupported by the medical staff because I just couldn't get any answers to my questions. I spent a long time looking up local support groups, and it made me feel a lot better knowing they were there if I were to need them. I felt incredibly lucky that my husband and I felt the same about how to proceed and wanted to make the same decisions. I remember feeling very sympathetic to any couples who found themselves in that situation who disagreed with each other about what to do next.

So far my second pregnancy couldn't be more different. I haven't been sick, and the dizzyness hasn't been as extreme. We've just had our first scan and all seems to be progressing well. We declined the test this time.

The reality of motherhood once Isabelle was born was in large part what I was expecting. Isabelle didn't sleep through the night for about 7 months, and for a long time was feeding almost every 1.5 - 2 hours, including at night. I really was exhausted. The combined exhaustion and wonder of it all meant that there were days and days where I just looked at her, and studied her face when she was sleeping. I remember people telling me that sleep would be interrupted and to sleep when baby sleeps. People who said that made me want to scream by the end of the first few weeks. I just couldn't put Isabelle down for about 5 weeks. I remember doing the 'pick up put down' thing and settling her and then popping her in her moses basket, but she would only sleep when she was being cuddled. She would cry and cry and cry otherwise. In the end my husband and I would tag team the night shift to try and make sure we both got some sleep. So I was up til about 3am and then he would get up. The time she first slept an hour in her moses basket I actually did a little dance. She didn't have naps in her cot during the day until after she started nursery and they all did it there. Luckily she does now still have a nap, which means that finally I can sleep when baby sleeps and have an afternoon nap if I need one!

Taking your child home for the first time:
I gave birth at 5am and remember getting onto the ward at 7am, just when the curtains were being opened, breakfast started coming round and everyone was rising for the day. All I wanted to do was close my eyes, but a steady stream of people would come by, from the photographer to the ear test lady to the person asking what I wanted for lunch etc. I decided by about 8am that I didn't want to stay in hospital and just wanted to get home as fast as I could. It took til 4pm for us to be able to leave and I was getting really impatient to get off the ward and into the privacy and quiet of my home. I remember wanting to sit in the back of the car with Isabelle on the way home to be close to her. We had said no overnight visitors for the first couple of weeks, as we just didn't know how we would feel, but I really enjoyed having a steady stream of people popping in to see us. People were brilliant and brought us food, and did the washing up and just came and talked and offered company, which was perfect. I couldn't really walk much for the first two weeks and so having friends come and entertain us while I sat on the sofa was perfect. I remember the first night being both wonderful and daunting, and we were in the middle of a heatwave, and I remember having no idea about how to make sure her temperature was right. Would she be in a draught if we open the window? Will she be too hot if we don't? And the reality of what a sleepless night actually means. I was very glad I was at home, and very glad Tom was there next to me, rather than being on a ward by myself. 

The best/worst advice: Everyone offers an opinion. The most frustrating thing is those people who tell you things as fact. That something would work for every baby is nonsense, and so much of it is feeling your way and using your instinct and finding what works for you and also for your child.
I would say the main thing is to take help where it is offered. Or demand it if needed. If at the beginning people want to come and see you and meet the new baby, get them to bring lunch with them and if they offer to wash up - let them! It makes having visitors far more enjoyable. Everyone pitching in a little is so much better than you trying to juggle everything yourself. You have more important things to focus on.
My NCT group was a wonder, and we are still in touch and see each other most weeks now. It gave us all a group to share experiences, and often it was a relief to know other mothers were experiencing the same thing, or just to collapse on the sofa with a group of people just as exhausted as I was and completely understanding of what that means. The days could sometimes have felt very long without them.

The hardest parts of being a mother: I have found the hardest part came after maternity leave. I am a freelancer now but find my industry doesn't lend itself well to being balanced with motherhood. This came as a bit of a shock to me, as I've always thought arts and charity work are so pro the work/life balance that it would be relatively easy to work part time. The trouble is that so many aspects of this work are festival and/or evening based, that having a child in nursery 3 days a week doesn't give me the flexibility I need to make some of the work happen.
I used to go and see many live performances in literature and theatre, and go to talks and debates and networking evening. I miss the cultural offerings around Manchester, and I know I need to find a way to create a better balance with arts/culture and motherhood.

The best parts of being a mother: I love motherhood. I love discovering Isabelle's personality. She is incredibly fun to be around and it is a delight to see her discovering language and to see her sense of humour develop. She is excellent company and I'm very excited to see how she responds to being a big sister when the time comes next year.
I enjoy discovering the world from a new angle myself too. In showing the world to Isabelle and watching her discoveries and her delight I find I'm inspired and filled with wonder again myself, especially by things I forget to notice now because they have become ordinary.

Hopes for your family: That we continue to enjoy each other's company.
I also hope that I will be able to pay enough attention to Isabelle and the new baby next year. I want to feel that I'm giving enough attention, but also that I am experiencing enough of my children too.

What advice would you offer to new and expectant mums: Use your support networks, whether in person or online - find what works for you. Motherhood is wonderful but it is also extremely hard, and asking for help is a good thing to do.
Your instinct is the best tool you'll ever develop, so make sure you listen to it.
Your child is an individual and so are you. You can have all sorts of ideas about the kind of mother you will be, but you may be surprised by how your child responds. Don't be frightened of trying something completely different.

Monika Neall is a freelance community engagement manager in Manchester.
*She specialises in marketing, outreach and engagement strategies and projects.
*She provides corporate social responsibility consultancy for SMEs.
*www.the-pebble.co.uk

Amy and Ella

Name: Amy


Child: Ella, 11 months


Location: Manchester

Expectations of motherhood: I have, for as long as I can remember, wanted to be a mum. Falling pregnant with Ella was a surprise. Ian and I had been together 9 years and often spoke of starting a family, but we were planning on it being a few years further down the line. Ella had other ideas! We are the first of our friends to have a baby so I didn’t have anyone close to me I could talk to about pregnancy, labour or looking after a baby.

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.

I do love taking her new places and showing her new things. And that first smile of the day – sends my heart fluttering every time. I feel a sense of pride when I am with her and like a part of me is missing when we are apart.

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.

Hope’s for your family: I hope.....

... 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.

Nobody likes to talk about it, but sometimes things do go wrong, life doesn’t turn out the way you had imagined and it’s hard. But as time goes on, the bad days do get fewer and further apart and through it all, life goes on.


Amy has a blog at: http://adifferentview-amy.blogspot.com