Showing posts with label heart problems. Show all posts
Showing posts with label heart problems. Show all posts

Thursday, 11 October 2012

Claire, Grace and Faye

 Name: Claire

Children: Grace (18yrs), Faye (12yrs) and Sam (died aged 6 months)

Location: Manchester

Expectations of motherhood: I suppose I just always assumed I would be a mum. I am one of four and I reckon I always had a very traditional view of how my life would pan out – career, marriage, children, in that order. I also always dreamt I would have three children. Four seemed too many; can’t fit in a standard car, need more bedrooms, costs too much to go on holiday etc.

I don’t think I had any firm ideas of what sort of a mother I wanted to be. My mum never worked when we were children and dad worked long hours and was often away from home. Although it was good to have her there every day after school and home-made meals were a bonus, I remember her being quite stressed caring for four children and probably frustrated with her dependence on my dad. Consequently I think it was important to me that I could have a balance between career and family life and therefore part-time work has been the solution.

I never considered not having children and I never thought they would be anything other than perfect and healthy.
Reality of motherhood: When I became pregnant with Grace I was delighted. I remember telling my family and feeling really special. I thoroughly enjoyed being pregnant and had no sickness or back pain – it was a text-book pregnancy culminating in a really quick, easy birth. When I became pregnant for the second time I just assumed all would be the same. The pregnancy progressed in much the same way as the first. 

This all came to a crashing halt when we went to the clinic for my routine anomaly scan at 20 weeks. The sonographer explained what she was looking at and we nodded vague agreement. Suddenly she stopped talking and it was immediately obvious that she was concerned. She asked if she could get her supervisor to come and have a look and together they discussed our unborn baby. Finally they told us that they were unable to see all four chambers of the heart and although this might be due to the baby’s position they would like us to attend the specialist cardiology clinic at another hospital the following day.

The next day the cardiologist delivered the devastating news that our baby had the life-threatening heart defect Hypoplastic Left Heart and could die within 72 hours of birth if not operated on. What followed was 4 months of anxiety, tears and prayers for a miracle. I was scanned fortnightly just to have the terrible prognosis re-affirmed again and again. The option of a termination was offered but we desperately wanted to give him the chance to fight. My first pregnancy had ended in excited anticipation and a yearning to see my baby. This pregnancy, my mothering instinct was to protect him and I dreaded going into labour. I knew that whilst my baby was inside me he was safe and protected. To give birth would mean handing him over to the medical profession and would start a journey that I really did not want to go on and life would never be the same again.





Sam was born at the specialist maternity unit and within minutes of delivery he was taken from us to the Intensive Care Unit where he had a barrage of blood tests, scans and examinations. I felt out of control and numb, I wanted to tell them to stop but knew that they had to do it. I wanted to pick him up, walk out and take him home like I had with Grace. We were asked to make decisions about operations that offered no guarantee of cure, versus no treatment, which would inevitable result in death within days. Eventually we agreed to the surgery which would be just the first operation in a series of three that he would need. We were transferred by ambulance to Alder Hey Hospital within hours of delivery and the operation was scheduled for 48hours time. During that time Sam was christened by the hospital chaplain and family and friends came to visit us in Liverpool.

The operation took 8 hours and Sam spent 3 weeks on the Intensive Care Unit where we had several scary moments of being called to his bedside in the middle of the night because he was so poorly. However he was a strong little boy and he made it to the ward where he spent a further 3 weeks getting stronger and preparing for home. Home for the past 6 weeks had been the family accommodation at the hospital and the other families we met became close friends and support to us. Grace stayed with us the whole time with just the occasional day trip back to Manchester with friends and family. However I hated her going and wanted to keep her with me – I felt out of control at times and needed the comfort of those who loved me close to me.


Sam died suddenly during a routine operation aged 6 months. Our world came crashing in. He had fought so hard and endured so much during his little life that I couldn’t believe he was gone. I had spent every day totally absorbed in his care, expressing breast milk because he had difficulty latching on to the breast, administering medication every 4 hours and lovely activities like lavender massages and singing songs to him which would make him giggle with delight. Grace had been the perfect big sister, never jealous of the attention Sam needed and would be my little helper at nappy times. During these dark days I had chance to reflect and I took some comfort in the fact that we had had opportunity to know and love our little boy. He gave us so much, he galvanised our relationship and the family unit and he made us realise that all the money in the world, big house, nice cars, career are just not as important as your family and keeping them safe and healthy.

When I discovered I was pregnant with Faye I was apprehensive and scared. The upset and anger of ‘why me’ when I discovered Sam’s condition was replaced with the realisation of ‘why not me’. We knew the probability with Sam had been 1:5000 and the odds of it happening again was the same but we now knew we couldn’t take it for granted that our baby would be born healthy. I had a fantastic midwife and GP who supported me through the pregnancy and it was with their backing that I made the decision to have only one anomaly scan (we had become experts on analysing the heart chambers on scans!). I then went on to request a home delivery, which shocked many of the hospital staff but it was important to me that I was in control and had minimal medical intervention.

Faye was born at home with just 2 midwives present while Grace played in the other room …it was perfect and so was she! For us, she made our family complete, we had had our three children and she was the image of her brother, same big brown eyes and loved the lavender massages.


Taking your children home for the first time: Well, for us all three were different! Bringing Grace home was very special, it was Christmas Day and we were scared but excited at the prospect of discovering what sort of parents we would be. We knew our lives would never be the same again and this tiny baby became our world. There were tears of exhaustion and thoughts of, ‘how are we ever going to get through these early weeks?’ But we did and we soon settled into the routines around Grace.

Bringing Sam home for the first time when he was 6 weeks old was amazing! We couldn’t believe we had finally got him to ourselves and so many times we didn’t dare allow ourselves to imagine this day ever coming. We had lived day by day or even hour by hour when we were on ITU but now it was our turn to simply be mummy, daddy and big sister. The machines, hospital beds, uniforms and noise was over and we could start doing all the normal things like shared baths, walks in the park and Grace lying on the carpet chatting away to him!

Faye being born at home makes the house very special to us and I can’t imagine ever moving. The normality and comfort of Faye’s birth was such a stark contrast to Sam’s and I so appreciate the midwives, GP and my husband for supporting me in my decision. I’m sure they were all a little scared but they didn’t show it!
The best and worst advice: I can’t remember! I think over time you realise that you are the expert on your own children. It’s important to speak to the health visitor, family, friends, read the books and trawl the internet but after listening to everyone, take on board the bits that fit and forget the rest. Remember advice is just that – you don’t have to follow it to the letter.




The hardest part of being a mother: Having been a mother for 18yrs now I’d say there are no hard parts. Being a mother is me, it’s what I am, so it’s not hard. There are times when you feel stressed when children have tantrums, don’t eat, won’t go to sleep but this is more about my coping strategies and how I’m feeling. At every stage as they grow up there are new challenges and you realise that you grow together and every child is different. The hard part for me now is coping with Grace going to University this month. The time passes so quickly and although I am going to miss seeing her every day we are immensely proud of her and all that she has achieved. Consequently we are proud of ourselves that as parents we have assisted her along the way and she is embarking on a new independent chapter in her life as a sociable, confident and hard-working young woman – who wouldn’t be proud!
The best part of being a mum: All of it! As a mum you experience the full range of emotions. You worry when they’re poorly, won’t eat, when they start school, leave school, go out with friends and when they’re coming home from a night out in Manchester at 4am! You get angry when they won’t share, fight with their siblings, answer you back and lie on the sofa all day watching TV. You cry when you’re tired and they won’t sleep, when the breastfeeding hurts, when they start school, leave school, when their relationships break-up, when they cry!! But you laugh lots and lots, when they giggle for the first time, when they sing and dance for you, when they say the funniest things (write them down because you forget!), when you find the same things funny on TV and realise that you love their company and personalities. But probably the best part is simply being there for them. Giving them your time when they need to talk, listening to their worries and sharing their joy.

Hopes for your family:
That both my girls will stay healthy, happy and close as sisters.
That they will have loving relationships and fulfilling careers.
That they will know that we are always there for them andThat they will come and visit us in our old age!




What advice would you offer to new and expectant mums: Enjoy it, but be prepared to be questioned about decisions you make and have the humility to admit if you’re wrong. Parenting is a massive learning curve and every stage in your children’s lives brings new challenges but also joy and pride that you will never experience in any other aspect of your life. Make time for your children, be available physically and emotionally so they know they can talk to you about anything. But also make time for yourself and for your relationship. Eat well, exercise and be a role model for your children and when the time comes for them to move on, share in their excitement knowing that you have done your best as a mother and believe it when everyone tells you they are going to be just fine……

Claire runs http://www.pramactive.co.uk an outdoor postnatal fitness programme for mums (and their babies!) catering for all fitness levels and fitness needs. 

Wednesday, 9 November 2011

Den and Harry

Name: Denise
Child: Harry, 5
Location: Manchester

Expectations of motherhood:
My husband and I had been determined that we wanted to live out a perfect fairytale. We'd been together for a long time and marriage had been important to us. The next natural step was to have children. As children who'd both been born as accidents and from unconventional families, it was important for us to do things 'the right way'. Looking back, the fairytale couldn't have turned out any more differently to our expectations. I'm a single parent now and I'm having to write a new story, and so in retrospect none of that actually mattered.

Never in a million years had I expected to become a single mum. We'd been obsessed with doing 'the right thing' as a couple and doing what made us look like the perfect family, but in the end it just didn't work out like that. It sounds crazy now, to think I was so conservative in my attitude towards becoming a parent.

Reality of Motherhood:
The bubble burst immediately at Harry's birth in a traumatic 18hr labour. Harry was in the wrong position - back to back - and was eventually delivered by emergency C-section. It made me reconsider all of my original expectations of motherhood. After 3 days of trauma and looking after this new little thing, finally coming out of the haze, I fell in love with him. For days I'd felt disconnected because of everything that had happened in the birth. Then finally it was like a little door in my heart opened - I like to call it my 'John Malkovich door'. As an adult you expect that you've experienced every emotion, but you really haven't until you feel this unconditional love for your child. I imagine people have more children because it's like a drug addict harking back to their first high. If you could buy that love as a drug, you'd be unbelievably rich.

Motherhood now, as a single mum, has meant a real change in my life, but I have realised that the fairytale can be rewritten and our relationship has developed into something really special.

Taking your child home for the first time:
We were kept in hospital for 5 days. By the time we left they had diagnosed Harry with hole in his heart and we were told that eventually he would need an operation. Returning home was tinged with the worry of not knowing exactly what was wrong. We found ourselves dealing with the emotions of being new parents, sharing the same experiences as other new parents, but at the same time being scared stiff because of what was potentially going to happen to our poorly baby. 

I tried to enjoy him as much as possible in those early months. I indulged in doing the things you can do as a new mum - not having to get dressed, eating cake, etc. Other people expected me to look after them when they'd descend on us, but I wanted us to be spoilt. It's a strange bubble you're in while midwives, health visitors and parents-in-law breeze through your door on a daily basis. I really enjoyed feeling special for those first few weeks, and then it hit me that I was going to smell of sour milk for the next few months. I remember one occasion when I was in the supermarket with my new born baby, and everyone was smiling and looking at me. I felt so proud with my beautiful boy. At the checkout I remember seeing milk all over the till and in reporting it to the assistant. Her eyes glanced down to my chest - it was me!

Harry had open heart surgery at 5 mths, and it was a totally weird experience. Up till then he'd lived as a relatively normal baby boy. I remember becoming obsessed with breast feeding - I'd originally felt like I didn't want to be bullied into it, but when it transpired that he was ill I did become a bit evangelical about the whole thing. It was the best medicine he could have and as a fairly helpless parent it was the one thing I could do to help the situation. 
I knew that the bigger and stronger he could be for his operation, the better.

Harry was in Alder Hey for 3 weeks and we stayed with him during that time apart from the 3 days when he was in intensive care. That time really opened my eyes to how lucky we were. I remember one time when I was making pot noodle in the hospital kitchen and came across a dad who was making a full sunday roast for his family in the kitchen. I said, "you're pushing the boat out, aren't you?" and he explained that they'd been in there for 18 mths with his daughter and he was trying to regain some normality. His daughter had a brain injury and he didn't know when they'd be leaving. 
We were so lucky because Harry could be mended, and it was that moment when I went from, "why me?" to "we're so lucky". After his operation he recovered quickly and has managed to live life as a healthy little boy since.

Best and worst advice: There's no one piece of advice that has stuck out to me, but it's important to discuss problems with friends. Everyone has their own pearls of wisdom but not everyone finds the same thing works for them. Trust your instincts.  

The hardest parts of being a mother: Nobody tells you that at some point you will really dislike (almost hate) your child. You'll love them, but you really don't like them, and that's ok and normal. Our relationship has changed since I've become a single mum because I have to be 'good cop' and 'bad cop' now. He can go to his dad and experience purely good times, whereas I have to lay down the rules and discipline him. 


Recently the lines have blurred slightly between being a parent and child - in earnest, I probably discuss more with him than I should but I like to be very open with him because we're a team. I don't have to share him with anyone as a single parent - I have to cope with the bad bits but I get all the good bits and those dark moments have made our relationship so much stronger. 


I miss reminiscing with someone or sharing with someone about how amazing he is. I also can't ever leave a situation and get distance from being a mum, like just saying I need a bath or my own time. I don't have any family support nearby, but I have got a network of really good friends. Without them I wouldn't have been able to get through this. I'm much braver as a person now too, motherhood has shown me that I am quite strong and can get through things.

The best parts of being a mother: I love him, he's funny and has his own personality. He's
my best friend for life and we have a lovely relationship. He's also at an age where we can do fun things together like sneaking him into the cinema to see films he's not really supposed to. 
He's his own person and has an incredible personality and his own very valid opinion. I love that he's great company - for kids and adults - and he is genuinely funny. I'm so proud that he has created independent relationships with adults who are my friends, and these are relationships that exist because they honestly like each other. At first when we did things, just Harry and I, it felt like someone was missing for both of us. Recently it feels like we are a complete family, just us two.

Hopes for your family: I hope he'll be able to have a good relationship with his father. 
I hope that he felt loved by us growing up. 
I want him to always be happy in whatever he does and chooses to do - I think that's all that matters.

What advice would you give new and expectant mums:
Listen to your own voice, don't be bullied by anyone.
- Don't buy into false expectations and fairytales.
- It's your book, you are the author, you have to write it.
- Whatever you choose to do, it's the right way.
- You can feed them all the organic purees you want, and give them a great mixed pallet of tastes, but by the age of two all they'll want to do is eat white food.
- Everything passes, everything is a phase.
- Enjoy it. Luxuriate into the first 6 mths, sleep when the baby sleeps and you'll get enough.
- Give in to being a mum and meanwhile don't feel bad about not being the best wife, lover, daughter, work colleague or project manager of your home renovations.
Take the time out the indulge in motherhood, this is the time to do it.

We get really hung up on what we should and shouldn't do, but all that matters is having a happy child. There's a tendency to buy into what people tell us to do in books, 
but people have been having babies for 1000s of years without them.