Breastfeeding After A Loss SupportHost
Breastfeeding is hard. Everyone who feeds, whether it is for one feed or for thousands, knows this. When it is your second, third, fourth or later baby, and a baby before has died, it’s even harder.
The NHS say that 1 in 8 known pregnancies will miscarry. SANDS say that in 2018 1 in 150 babies died before birth or before they reached 4 weeks old. Around one third of stillbirths happen after 37 weeks gestation, and stillbirths account for more than half of the deaths of infants under one year in the UK. Stillbirth is 10 times more common than cot death, yet it is barely talked or known about. This can make parents feel incredibly isolated, both when they are in the midst of it and in later years when they may have other children to care for.
Every loss is different, and every parent grieves differently, but there tend to be common threads: You do not trust your body to grow another healthy baby. You might not trust healthcare professionals, especially if your loss is linked to poor advice or poor care. You know that anything might happen, and nothing can be taken for granted. You are paralysed with fear of your next child dying, and this can manifest in many different behaviours. You are terrified of baby groups, of hearing others complain about their baby, or motherhood, or of hearing the dreaded question – is this your first (because how can you answer that when you are in the throes of grief and fear?). You watch your baby like a hawk for any signs of illness, however normal or minor.
There are various organisations that provide support after the death of a baby – Sands, Norfolk Sands (which Carly and Sarah are committee members for), Norfolk and Norwich Baby Bereavement Group, Tommys, Time Norfolk, the CONI scheme.
Along with the existing BMM hosts, Carly and Sarah will be attending special meets and answering your questions and concerns on the Facebook page. We hope to travel around and cover all of Norfolk to make sure nobody is left out and we will be using the Facebook page to find out what you want from our meets and where you need us. The meets are open to anyone who feels they would like the support – so whether your baby died in the first trimester, later in pregnancy or after he or she was born you are welcome to come along
Introduction of two special hosts
A post last year brought to our attention the amount of members of the group who have suffered from infant bereavement. It is a topic which causes pain to many of us and sadly is not discussed very often. For this reason, we have two incredible ladies to welcome to the hosting team. Both are committee members for the charity Norfolk SANDS (Stillborn and Neonatal Death Society) and have offered their support to help the BMM mums through the additional stresses and concerns which come with having a rainbow baby. Sarah and Carly will be joining our hosts in providing special meets once a month in different localities.
SARAH
I’m Sarah, known as Sa Greenious on Facebook, mum of two lads. I spend a ridiculous amount of time crocheting. I like superhero comics, reading and I’m doing my best to reduce our plastic waste. My first boy was born at term in 2014, 2 days after he had died. When we fell with our second, I was determined to breastfed, and we fed until he was 3 years 3 months. We had an interesting time of it – small mouth/big boob issues, mastitis, pain, vasospasm, slow weight gain, tongue tie (cut at 5.5 months), stopping feeding then relactating, and aversion. It was not easy, but I was scared to stop. Now I really miss it! I was (still am!) so furious at the lack of quality, useful, breastfeeding information given antenatally I decided I wanted to support other parents, especially those also breastfeeding after a loss, so here I am!
SARAH’S STORY
My first boy died at 37 weeks after a perfectly normal, low risk, standard healthy pregnancy. We don’t know why. We went into the NNUH for a movement check and were told he had died. We returned 2 days later, I was induced and after a quick and straightforward delivery my beautiful, dark haired, darling son was born. We fell pregnant again a few months later. After 9 months of hell and weekly checks our rainbow* lad was born healthy and wailing. The NNUH kept us in for a couple of days to get our confidence up and get feeding established. Then he got severe jaundice, so we didn’t go home until day 5. At 4 weeks we went to our local Sure Start Centre’s breastfeeding group, and that was a lifesaver. I gradually started chatting to people, I opened to a few about my first, and I made one lifelong friend. I think most mums have worries about breastfeeding, but feeding after a loss gave me some very specific health concerns – is he getting enough (because if he isn’t he will die), if he falls ill will breastmilk be enough to save him (because if not he will die), is it OK to give some formula (because if it fills him up too much he’ll go into a deep sleep and will die from SIDS). These fears gradually abated after the first year, but I continued to find it very difficult to understand that my son would recover from illnesses without breastmilk. This is part of the reason we fed for so long. But at the same time as putting all my hope in breastmilk, when I see those ‘breastfeeding is my superpower’, ‘Mama knows best’, ‘Trust your Instincts’ memes, I cannot relate because my body and my instincts failed me when my baby died in my womb. This made mothering a new born rather isolating. My desire to breastfeed was mostly driven from knowledge of the benefits, rather than me enjoying it. Breastfeeding (indeed any feeding) was (is) such a complicated subject for me. My son had a tongue tie that wasn’t cut until 5.5months. So, feeding hurt all that time, but it was hard for me to push for a referral because I was vulnerable and a mess and really didn’t ever want to go back to the hospital, ever. Those months of pain left me with permanent aversion. I’m glad I fed my rainbow, I’m glad we got to over 3 years, and now I miss it (even though I often found it too much). I wish there had been loss specific support groups when my second was born, they would have been really helpful to me. That’s why I want to become a BMM host, so other loss mums don’t feel as isolated as I did.
CARLY
Hi, I’m Carly. I’m a second time Mother to my rainbow baby George who is 20 months old. My daughter Ella would be 3 but was stillborn at full term. After a very difficult and scary start, George has thrived on breast feeding and still shows no signs of wanting to stop. I’m passionate about supporting others to breast feed, and particularly want to offer support to other Mums who are parenting after loss, as I understand the fears and anxieties that come with it. I put my career on hold to be a full time Mum to George, just working a few hours now in the evenings. We spend our time exploring Norfolk and looking for new adventures. He loves the outdoors so I’m learning to love it too. Fortunately he also shares my love of food, books and crafts (when he sits still long enough) We are looking forward to meeting you all at meets soon!
CARLY’S STORY
In the Summer of 2016 I think I was the happiest I’d ever been. I’d left work a couple of weeks before with a boot full of flowers, baby clothes and gifts after a surprise baby shower from my colleagues. We had enjoyed a last holiday and my brother’s wedding, my hospital bag was packed with my little girls first outfit picked out, and I was spending my days relaxing in the sunshine waiting for her arrival. I had loved every minute of being pregnant and had been healthy throughout. Suddenly that all changed, and my world fell apart. Overnight, while I slept, my baby girl died inside me. The nightmare that followed is something I thought I would never go through, nobody thinks the worse will happen to them, bad things happen to other people. The realisation that that isn’t true makes you feel much more vulnerable, aware of your own mortality and particularly that of any future children. Getting pregnant with George a few months later saved me from the black hole I was falling into. I had become agoraphobic, anxious and scared of the dark. I had made the decision to return to work and try and get myself back to me, and despite panic attacks for the first few weeks, the support of those around me helped me get back to a point where I could consider another baby. No longer could I allow myself to break. Looking after myself became imperative to looking after my baby. It was a cautious pregnancy, all about survival. I had daily injections and more scans and check-ups than I can count. I chose to be induced at 37 weeks as that was the point, I lost Ella. When George was born healthy, I wasn’t prepared. I had expected the worst again and hadn’t mentally prepared myself for having a living baby to look after and take home. Our breastfeeding journey was a difficult one for the first few months. We were readmitted to the hospital within the first day as he was refusing feeds. He was immediately put on a drip and I felt I’d failed him straightaway. I didn’t trust myself not to kill him. I pleaded with the feeding team for help and we were given 24 hr support to feed every two hours until he was signed off to go home. I became obsessed with whether he was getting enough milk and he was constantly at my breast. I barely left the house, or even the sofa, for months and I never put him down. We struggled with latch and positioning throughout; the struggles of being big breasted. We developed an awkward position requiring a pillow and both hands holding him in place. This made me nervous to leave the house or feed in front of people and it took a long time to gain confidence. I discovered BMM when George was about 6 months old and wish I’d found them sooner. By then I was a more confident feeder but found support through leaving him for the first time (a huge step for me) and returning to work without having to end our breastfeeding journey. George still feeds at 20 months old and I plan to let himself wean when he’s ready. I’d love to use my experience and newfound confidence to help others, particularly those who have been through loss. With Sarah, I want to create meets where those of you who are feeding after loss can come together with others who understand. We can talk about our loss, our worries or just about normal everyday Mum and baby stuff without the elephant in the room. A place for understanding, support and gaining confidence as we navigate the scary world of parenting after loss.
*The term rainbow baby means a baby conceived after a loss, i.e. the rainbow at the end of the storm. They don’t negate the storm, but are a product of it
