Are we giving up on breastfeeding?

I’m just asking.  Life is really tough at the moment.  Really tough.  This government is grinding down families, the vulnerable and those who care for them.  There’s no funding for anything.  This year has been a hard year in many ways.  Resilience is low.  Morale is low.  I get it.  So I’m just asking.  But are we giving up on breastfeeding?

On the #MatExp Facebook group today we have been talking about the new fad for baby boxes.  I am ready to be corrected on my understanding of these because it all seems about as clear as mud, but from what I can gather these boxes are provided by the Baby Box company, which is neither WHO code compliant nor UNICEF Baby Friendly. But they are being embraced up and down the NHS.  And in many cases trusts are using them to put across the message that bedsharing is dangerous.

So the NHS is launching, with great fanfare, schemes which do not comply with the codes and guidance we have in place for protecting and supporting breastfeeding.

At the same time it is once again putting the message out there that sharing a bed with your baby is very dangerous.  Why does that matter?  Well it matters for three reasons:

1. Sharing a bed with your baby is not dangerous.  There are ways to do it dangerously and ways to do it safely, as with everything to do with infants

(see https://growingfamilies.co.uk/2016/06/15/the-practicalities-of-sharing-a-bed-with-your-baby/)

2. Those who bedshare breastfeed for longer

(see https://growingfamilies.co.uk/2016/09/04/infant-sleep-expectations-and-reality/)

3. Breastfed babies appear to be at a lower risk of SIDS.  The very thing these safe sleep messages are trying to combat

(see http://pediatrics.aappublications.org/content/123/3/e406.full)

Some in the NHS may be unaware of these facts.  But plenty of those in maternity and infant feeding know this stuff, yet they are still keen to promote the baby boxes.  “Free” stuff for parents seems to trump any concerns about the messages being given out and their potential effects.

Similarly, knowledge about and passion for upholding the WHO (World Health Organisation) code still seems to be limited.  This code has been in place since 1981 yet still many people and organisations seem not to understand it.  Just this week two midwifery organisations have been confused about the code compliance of a particular company, and have felt that this company’s support was appropriate for them despite the company in question undermining breastfeeding.

Information is not hard to come by.  If we are talking about safe bedsharing, then some places to look are:

https://www.isisonline.org.uk/

http://www.llli.org/sweetsleepbook/thesafesleepseven

https://growingfamilies.co.uk/2016/06/15/the-practicalities-of-sharing-a-bed-with-your-baby/

If we are talking about WHO code compliance and conflicts of interest then some places to look are:

http://www.babymilkaction.org/

http://www.ibfan.org/

http://www.firststepsnutrition.org/

http://lifib.org.uk/

There really is no excuse for midwives, health visitors, paediatricians and others supporting new families not to be informed about these issues.

From http://www.bestforbabes.org/

One NHS employee told me:

“This week  I’ve had the task of going to all the baby clinics to check BFI standards. It’s a joke. Leaflets & posters out of date and the the advice shocking!!!!!! I’ve never heard such out of date rubbish. I was told that bed sharing absolutely no. They don’t have time to ask or give other info and no point anyway as most mums now formula feed. They have just halved our budget for breastfeeding support and are pulling us out of the hospital because apparently the midwives can do our job. But the drive in our area is reduced infant mortality as deaths are so high. They are looking at these damn boxes. When we said breastfeeding is the best way to reduce infant mortality they said yes but it makes pressure on mums. It’s beyond ridiculous.”

Is this where we’re at?  Come on, be truthful, is this where we’re at?  Despite knowing that increasing breastfeeding rates would reduce so many instances of illness in both babies and their mothers, are we giving up on it?  Is it just too hard now?  Is it just too difficult in this climate to keep pushing for support and education?

There is no need for the conversation to STILL be about “pressure”.  Baby Friendly’s Call to Action makes that very clear.  What are the barriers to this call to action being implemented?  What is making you feel like we might as well give up?  How can we help?  How can we all keep coming together to tackle this?  Because I for one don’t want to give up.  Do you?

Helen Calvert
@heartmummy
October 2016

Waiting for the Fontan

Our little lad needs more open heart surgery next year.  We have always known this to be the case.  He has Hypoplastic Left Heart Syndrome, the left side of his heart doesn’t work.  The surgical pathway is a 3-stage process: operation 1 as a newborn (David had his “Norwood” procedure at 5 days old); operation 2 as a baby (David had his “Glenn” procedure at 5 months old); operation 3 as a preschooler, usually between the ages of 3 and 5.  David turned 3 last month.

At his last cardiac clinic back in the summer his cardiologist confirmed that his third stage operation, the “Fontan” procedure, is likely to take place in summer 2017.  He will be the right age, and it will get it over and done with before he starts school nursery.  I was really happy to hear this.  We had been thinking that summer 2017 would be a likely time, and it was nice to have this confirmed.  We had planned holidays for this year and I had been working on a conference, thinking that this year we could afford to plan, and then next year we would keep things fluid, in anticipation of surgery.  So it was good to have this confirmed as “the plan”.

His cardiologist explained that David will need a brief heart catheter procedure before the big op, to check “his levels” (whatever that means) and to make sure they know exactly what is going on in there before the Fontan.  A friend of mine explained that this is usually a 2 hour procedure, assuming everything is straightforward.  It’s pretty non-invasive too, it’s sort of keyhole (is my understanding) rather than the big “open ’em up” jobs we’re used to.  So that was fine.  A heart catheter procedure and then on to the next big one.  Right.  Sorted.

And then something changed.  We started to tell people that David’s next big operation would be next summer.  Almost definitely.  We started to think about that in all seriousness.  We made a photo book for David showing him pictures of his first 6 months, what he looked like intubated, his scar and so on, because of course he is the only one in our family who doesn’t know what he’s been through!  We talked to his older brother about how this time around we will all stay together as a family, we will all go to Alder Hey together (taking Edward out of school if necessary, which his school is quite happy with).  It may sound strange to some people that a) we talk about these things in advance and b) we talk about them to 3 and 5 year olds, but that’s what works for our family and our children.

Baby Boy and his Big Bro

We knew we were going to be entering a stressful time.  The run up to his Glenn had been so incredibly hard on us as a family and on Phil and I as a couple.  We know we’re facing it again.  I started to feel anxious, not about the operation, but just generally.  Heightened anxiety.  I knew why.  My husband has started to struggle with anxiety, as unlike me he has never had the chance to write about, blog about, speak about and talk about our experiences.  He has needed some support.

And then an acquaintance posted on Facebook that her daughter was having her Fontan procedure.  And it threw me a bit.  And I mentioned this to a friend, who reminded me I don’t need to “worry” about David’s until it happens.  And I struggled to explain that I wasn’t worried as such.  That’s not how it is.  And then I was suddenly able to articulate what is going on:

It’s like stepping into the sea. And then you’re swimming. And you’ll keep swimming until you reach the shore. Things like today are big waves. One day we’ll swim through the storm. And we’ll get to a shore. We’re swimming now, we can’t go back to the beach we’ve been on for a couple of years. We don’t know what new shore we’ll get to. But we just have to keep swimming. We’re in the water now.

You know you have the right friends when they instantly get what you are blathering on about….  The wonderful woman replied with:

There are many small buoys  in your ocean…. to keep you afloat…. you touch them for a moment as you pass…. it gives you a brief respite…. the strength to keep swimming… You prepared well… xx

Many small buoys in the shape of amazing friends and family, and all of the good times we share.  And two small boys who make me laugh every single day.  David is a force of nature, always has been, born pink and screaming when he was predicted to be blue and listless.  Hasn’t stopped making his presence felt ever since.

So we’re in it now.  And there’s no turning back, and it’s going to be a long swim, and there are so many unknowns.  But when David was born Phil and I agreed that we would take every good moment as a win and that was that.  That was in the days when we thought we might only have him with us for around five days.  Three years on and we have bucketsful of wins.  So in the immortal words of Dory, all we have to do is

Helen Calvert
@heartmummy
October 2016

Learning to be a Mummy

This week, 9th-15th October 2016, is Baby Loss Awareness Week.  As part of the sharing of stories that is so important at these times, I am privileged to be able to share one mother’s journey.  This family has chosen to remain anonymous, but I know that their story will touch you all.

I don’t believe we ever know all there is to know about being a mummy & we learn to be a different mummy with every little life that touches our heart and change as a mummy as these lives grow. Over 11 years I have been quite a few different types of mummy. My first experience of being a mum was when I had my first pregnancy & first miscarriage. I became an INVISIBLE MUMMY. I saw my babies little heart beating, watched my belly begin to swell, and dared to dream about our growing family. I bought my first baby things and felt like the luckiest woman alive. Then my life was ripped apart when we lost our baby. Being a mum who isn’t recognised as a mum is heartbreaking. And even more heartbreaking was my baby not being recognised as a baby. The word miscarriage tore through my sole & the word foetus made me feel sick. I cried more than I’d ever cried & I feared it would happen again, only to be given statistics & told I was normal & unless I had 3 miscarriages they couldn’t even investigate why my baby died (because to me it was & will always be my baby). Then the well meaning comments of well you can get pregnant again, there will be another baby led me to my next type of motherhood, because little did everyone know I couldn’t, well not easily anyway. We consoled ourselves with a holiday to Florida & enjoyed all the magic Disney had to offer, but I wished we had a baby to share it with.

Soon after I became the DESPERATE TO BE A MUMMY MUMMY. Every month I was filled with hope then disappointment & the months passed & became years. The vitamins cost more as I researched the best ones available, things gradually became more scientific and my heart ached. Pregnancy testing became part of my monthly cycle as did tears. I watched as 1 by 1 my friends began having babies & I was happy for them but sad for me. Their lives moved on and I was stuck in a strange world where i couldn’t be a part of their conversations or family days out. Occasionally if I was around my friends & pregnancy came up I’d forget myself & say “I remember the horrible nausea & not being able to drink my morning cup of tea when I was pregnant” only for me to sense the discomfort as everyone’s minds switched to the miscarriage. The thing no one talks about. But for me those moments were precious, those memories were all I had of the time I was recognised as a mummy, even if it was only a brief few weeks. After 2 years I morphed again.

I became the the CAN I BE A MUMMY MUMMY? I longed to be a mum, part of the world my friends belonged to and after referring myself to a fertility consultant (I was told I was too young to be investigated on the NHS & I’d been pregnant so it wasn’t necessary) I embarked on learning about internal scans, ovulation tests and CLOMID!!! After embracing dropping my knickers & having my womb & ovaries scanned & a series of blood tests, it was decided Clomid might work as my ovaries needed a bit of help to produce some eggs. After taking my tablets as instructed & having sex when the time was right I went for a scan to check how my ovaries were responding. I dropped my knickers again & the scan started & my consultants face fell, and he counted and counted, muttered about me getting dressed & asked me to take a seat. It turns out the clomid worked too well & my ovaries looked like popcorn!!! I had OHSS. I was told I could be pregnant with 6 babies or more, I had 6 mature follicles and over 20 more on each ovary. I jokingly said, oh well an instant family. Apparently this was no laughing matter. The conversation turned to selective termination, me possibly becoming seriously ill, being banned from sex & our best hope was that I didn’t get pregnant!! So that morning I was hoping to get pregnant & now I had to pray I wasn’t. So again I cried & hoped & thankfully I wasn’t pregnant & apart from one trip to A&E with vomitting & shaking I never became seriously ill. As I lay on our sofa crying to my boyfriend I decided if I couldn’t have a baby I’d have a dog and after a few conversations I became A DOGGY MUMMY to a time consuming, unruly beagle puppy.

Being a doggy mummy was just what I needed, I had the sleepless nights, the cuddles, the toilet training & the puppy shopping. I indulged myself in puppy beds, puppy toys, pink blankets & Flo became my baby!! She has been my constant companion every since & has been through everything with us. I felt I could at least edge closer to my friends lives or at least move forward with ours. We booked a skiing holiday to Colorado and decided to try to enjoy life while we continued to go through more tests. So next up was the HSG a test to check my tubes. So the day before our flight to Colorado, I went along for my test… Cue more problems, they couldn’t even get the dye through my cervix (no bloody wonder I couldn’t get pregnant) so I was booked for an urgent MRI (this was the beginning of my very weird cervix issues). I went home feeling like every test was taking me further away from the baby I so desperately wanted & I started to pack. Then Flo threw us a curve ball & swallowed a plastic toy bone, DOGGY MUMMY lost the plot & off we went to the vets where she had to stay overnight & have drugs to make her sick. The thought of a knackered cervix & a poorly doggy baby combined with leaving the country meant I ended up crumpled in a heap on the floor of the vets sobbing, before being escorted home by my loving boyfriend. Our holiday to Colorado was amazing, on the first morning we woke up to sun & snow and I turned to my boyfriend and asked, if I can never have babies will you still love me?? And he held out his hand opened a box and asked me to marry him, it was just what I needed to hear & of course I said yes…. And whatever happened next we were most definitely in it together. And on our return I morphed again.

I became the IVF MUMMY, after the MRI & investigative surgery it was decided my tubes were sub optimal & our only real option was IVF. There was no more mention of my dodgy cervix, but it did rear its head time & again in the future. Our first IVF went well, I mastered the injections, coped well with the hormonal madness, grew enough but not too many eggs & embryos & after a difficult embryo transfer (dodgy cervix related) I had my first two week wait. I felt like a mummy again, with precious cargo on board and hope of a new life growing, I avoided goats cheese & caffeine & started to allow excitement to creep in. Test date came, so did a positive test, but so did the bleeding & again we were back to being invisible parents, dealing with loss of a baby no one knew about.

We decided to take a break & plan our wedding, it was amazing, we got married in Florida at Disney, we had such happy memories from our holiday after the first miscarriage & it filled our hearts with fun & energy. It is where dreams really do come true. When we returned home we threw ourselves right back in to the IVF & after a couple of failed frozen cycles, our fresh cycle started well. The injections were easy by now & I knew the process. We got a good number of eggs again. We waited for news about how our eggs were doing, wondering how many embryos we might get. I’ll never forget that day. My fiancé was at work, I had the day off & me & my mum were in the garden, the sun was shining & it was beautiful & the phone rang. I rushed to answer & it was my consultant which was odd, because it was meant to be the embryologist. Then came the news our embryos were great quality but had been accidentally dropped in the lab!! I took a deep breath & asked him to let the embryologist know I wasn’t angry & didn’t blame them because accidents happen & after I hung up the phone I cried like I’d never cried before, because I had to tell my fiancé that our embryos were lost. And another chance of becoming parents was gone.

So I became the LOST EMBRYO MUMMY, I wondered in how many ways I’d have to grieve, I really didn’t blame anyone but couldn’t believe it had happened to us. We consoled ourselves with the fact that we were young, could try again & it was best it happened to us rather than someone who couldn’t try again. We picked ourselves up & tried again. The cycle went well & the transfer wasn’t as bad. This must be our time. Test day came & it was positive!!! But again came the Bleeding, so I was booked in for an early scan. I got the best news I could have ever heard….. Twins, 2 strong heartbeats and the bleeding was just one of those things.

I became the TWIN MUMMY, it felt like the most special thing in the world, karma was treating us well, after all we had been through I felt like this was our time. I was the happiest I’d ever been. Everyone asked how we would cope, and worried about it being twins but to me it was amazing and we would cope just fine. I loved watching my tummy grow & feel my babies wriggling around together & wearing maternity clothes, everyday was a miracle. I felt blessed. But I also felt scared, somewhere In my mind couldn’t shake the worry that something might go wrong. Around 19 weeks I was thrown into a nightmare & I learnt to be a mummy I hoped I’d never have to be.

I was at work & had a sense something wasn’t right & after a trip to the toilet my fears were confirmed. I phoned the hospital & headed straight to labour & delivery. When I was examined I was 2cm dilated and in early labour. The next 2-3 weeks were the biggest fight of our life, emergency surgery, medication, bed rest, bladder problems & multiple trips between the antenatal ward & the labour ward. I’ve never had so much pain but every bit of it was a fight for our babies that I embraced. Finally our beautiful son George was born at 21 1/2 weeks. In the hour that followed his birth I experienced the proudest, saddest & most joyful moments of my life. He was the most perfect thing I’d ever seen, I was the mummy I’d always wanted to be, I held, kissed & loved my son, I watched his first breath & then his last. My heart broke. I examined every feature & gave him a lifetime of love. My husband was right by our side, our strength & I knew in that moment that I couldn’t love him more. But I couldn’t grieve yet because we still had to fight for his sister. Sadly 2 days later Rosie was born asleep, chubby thighs & our beautiful, perfect princess. Again the mix of joy & heartbreak was hard to bear. I wanted to tell everyone about our beautiful twins, how perfect they were & all about their birth. Like any mum does, but I wasn’t like any mum. George was classed as a neonatal death, Rosie was classed as a miscarriage, legally they weren’t twins & only George got a birth certificate. We spent time with them both & to us they will always be twins & our precious babies.

Now I was in new territory again, I was a BEREAVED MUMMY. I left hospital with 2 memory boxes but no babies, I was on maternity leave alone. We planned their funeral & made it just perfect, a celebration of their lives. It was everything we wanted it to be & the only gift We could give to our babies. I fought to keep every memory alive, to make sure my babies weren’t forgotten. I held on tight because those memories were all I had, all that gave me the strength to breathe. I was a mummy & I had held my children & no one was going to deny me that. I coped the best way I knew how. I lost friends, I gained friends. I was blessed with the most amazing consultant & nurse anyone could ask for, they helped us to embrace our past & face our future. Whatever happened next I still felt very lucky to have Rosie & George in our lives. I learnt to answer very difficult questions & how to avoid difficult conversations. Not many people deal well with conversations about baby loss. And we went back to Florida, our place of dreams & hopes & escape. I learnt to be a mummy with a full heart but empty arms. I learnt to live again not just to survive. I’d seen how strong our babies were & how hard they fought & I had to do the same & be a mummy they could be proud of.

We found out that my cervix was the reason why we lost our babies. I had an incompetent cervix which would remain a problem in any future pregnancies, but there were things that could be done to reduce the risks of losing another baby. So we embarked on a the scariest journey so far, we decided to try again, with Rosie & George watching over us. They gave us the strength we needed to get us through whatever was next. We had 2 more frozen cycles which failed, then a fresh cycle which gave us the positive result we needed. The pregnancy was hard, it was filled with fear, surgery, bed rest, medication & hospital admissions but I managed to enjoy feeling our baby kick & watching my belly grow. We had great support & low expectations. We hoped to get to viability, 24 weeks and any day past this was a bonus. We planned on having a poorly, ventilated baby on NICU and only hoped we could bring him home one day. We amazed everyone & made it to 35 weeks & had a healthy but tiny baby boy. I was in shock when he was born & couldn’t get my head around the fact he was ours after all these years I got to take a baby home. We hadn’t bought a thing just in case so the mad rush to buy baby things began as I tried to soak up every overwhelming moment.

“Waiting on Rainbow Baby” by Meg Nordmann

So I became a RAINBOW MUMMY. It took me a while to get comfortable with the term rainbow baby. It’s still not a term I use. It’s a lovely concept in many ways but I didn’t want this baby to be defined by what had happened before or for Rosie & George to be seen as the storm or the sadness that came before the rainbow. I saw them as a positive in our lives & tried to remember what they gave us. I wanted to allow Joshua to be himself, a little brother, a son. The task of looking after this tiny bundle was more amazing & more challenging than i could ever have imagined. It also brought more challenging questions. Is he your first? Answering this at a baby group or on the postnatal ward isn’t simple. I tried to judge who to be honest with & who to lie to. I remember lying to one mum who then spotted my necklace with Rosie & George’s names on & my lie was uncovered, so I was forced to tell her the truth, she quickly scuttled off never to be seen again. From that moment on I told the truth, well a semi truth, you see I always included Rosie & George so answered 3 with a brief explanation, but the truth is actually 6, my tiny angel babies I generally just kept in my heart. Joshua knows all about his brother & sister & enjoys our visits to the cemetery. I have tried to make it positive for him & I try to answer his questions as honestly & gently as I can.

After yet more IVF & another miscarriage, I’m currently pregnant again and on bed rest. This might be my biggest challenge yet, but we are embracing it the best way we can & there might just be a trip to Disney when this baby arrives safely.

I know I’m still learning & always will be. There are so many other types of mummy out there and I admire everyone of you.

I guess the real point to this is that there are so many different types of mummy, all unique with their own joys, sadness & challenges, none harder or better than another. Never judge the mummy someone is because you don’t know the mummy they have been or the mummy they will be. Even the doggy mummy has knowledge to share & joys to embrace. So next time she compares her life as a doggy mummy to your life as a baby mummy, don’t dismiss her or be annoyed at the comparison because maybe it’s the only mummy she’s able to be right now xx

Since writing this our baby girl has arrived safely & my heart is fuller than ever & our family is complete xxx

 

October 2016.

For support and information please visit:

https://www.tommys.org/baby-loss-awareness-week-2016

http://www.bliss.org.uk/News/baby-loss-awareness-week-2016

https://www.facebook.com/pregnancyafterlosssupport/

http://www.thepinksnblues.co.uk/