Living With Grief


Prom (North American): A ball or formal dance at a school or college, especially one held at the end of the academic year for students who are in their final year.

This used to be my only definition of the word prom. Even as British children, we all grew up knowing that prom is a big deal. Little did I know that the word, well acronym, would come to mean something else:

PPROM (medical): Preterm prelabour rupture of the membranes is a pregnancy complication. In this condition, the sac surrounding the baby ruptures before week 37 of pregnancy. Once the sac breaks, there is an increased risk for infection and a higher chance of the baby been born early.

PPROM is what happened with Summer and I. The ongoing bleeding I’d had from the 10th week of my pregnancy, likely caused my waters to break prematurely, but we’re not 100% sure on this; it may have been the infection that caused the rupture. My body took the PPROM as a signal to deliver the baby, so I went into labour and Summer arrived. She was just shy of 20 weeks. I’ve come to realise that this was not my body rejecting the baby, the opposite really, this was my body taking the PPROM as an indication of “baby’s ready! It’s time to deliver now”, without realising that it was far too soon.

It was explained to me that, my waters breaking so early, was a huge irrevocable problem. In pregnancy, the amniotic fluid is necessary for a number of things, including the formation of lungs (it’s sort of gross really; the baby drinks the fluid and pees it out again, over and over. But it’s also pretty amazing, as in doing so, it aids the development of their lungs and kidneys), so when Summer arrived at 19+5 weeks, it was much too soon, her lungs were not ready. It’s why she died after an hour, in my arms.

PPROM occurs in approximately 2% of pregnancies and accounts for between 25%-33% of all preterm births. Currently, there is no way to actively prevent PPROM. You may recall that I asked the doctors, if there was any way to get the fluid back around the baby. They said no. I was stunned: in a day and age where we can do brain surgery and heart transplants, we can’t give a baby more fluid or stop the rupture in the first place? More medical research into the causes of PPROM is required. What happened with Summer was in extremis, at 19+5 weeks, she simply could not survive, but could we help other pre-term babies to?

My goals for Mumoirs have expanded over time, but an overarching aim has always been to raise awareness, spurring action. The blog has put me in touch with a huge number of people and as the Q+A blog showed, this community of bereaved parents spreads far and wide: it is a global issue.

Since losing Summer, I have found support amongst a group of loss moms in North America: little girls who went to prom, who later became moms and then one day – just like I did – discovered the entirely new meaning of PPROM.

Making Waves For Coral

PPROM Queen: Julie

In 2019, Julie experienced PPROM and her little girl Coral was born extremely prematurely, she died at 18 weeks. Since then, Julie and Yhadird have been active in raising awareness about the pregnancy complication, fundraising via their “Making Waves For Coral” initiatives. This year, I’m pleased – for myself and Summer – to be involved. I asked Julie to say a few words:

“I wanted to do something in honor of Coral because I felt strongly from the moment we knew she was in danger, that her life had a purpose.

I toyed with the idea of trying to start some kind of family support initiative here, but found that there are a lot of options for bereaved families. That’s when my mom turned my attention to research. She pointed out that if a treatment or cure can be developed, so many more families would be impacted in a positive way.

I guess I founded Making Waves for Coral out of a desire to take back some control over a situation that tore my life apart and over which I felt absolutely no control.

I chose things that made me feel strong – first, our participation as a Charity Partner with the Baltimore Running Festival. Training for my race gave me a goal and helped me to start trusting my body again. We ran on October 19, the day before my 36th birthday. It felt amazing to know that I ran the full 7.4 miles without stopping or walking. It was my furthest run ever and it made me feel strong, Coral kept me going the whole time. Last year we raised just over $1100 for PPROM research.

This year the race went virtual due to COVID, so we decided to turn our attention to another issue that affects PPROM families: mental health. Through our Coral’s Waves of Kindness initiative, we are raising awareness to the struggles of anxiety, depression and feelings of isolation that not only affect PPROM families but everyone in these strange times.

Our campaign includes a merchandise sale raising awareness while honoring babies affected by PPROM and promoting acts of kindness and self-care in their names. Every supporter receives an acts of kindness BINGO card for ideas and inspiration. Finally, we held Grow Baby Grow, an online houseplant auction as gardening not only has proven benefits for fighting depression and anxiety, it was also one of my primary ways of coping with my post-partum bereavement leave.

My goal this year was to raise $500, acknowledging the financial struggles many are facing due to the pandemic.”

What can YOU/WE do?

Julie mentioned that she is selling merchandise in order to raise funds for research into PPROM. The items of clothing honour a number of babies who have died, and this year they include Summer’s name. In order to support this initiative, James and I are planning to buy these jumpers:

Making waves for Coral… and friends

I want Julie to be able to see Coral’s name spread internationally. I want to take pictures of us wearing these in iconic UK places, and when we can travel again, all over the world.

Would you like to join us?

There are t-shirts and jumpers, jogging bottoms too – perfect winter/pandemic ‘working from home’ wear! The clothing starts at $20 and all profits from purchases will go to the PPROM foundation, earmarked for research.

Take a look here and see what you think.

If you live in the UK, know me ‘in real life’ and would like to place an order, let me know and I’ll do it in one bulk purchase. Hopefully we’ll save on the international shipping costs that way. If you could let me know as soon as possible, that would be great. All orders need to made by the 15th November.

Adult XS = UK size 6
Adult S = UK size 8-10
Adult M = UK size 12-14  (FYI for guys, this is the size I’ll be ordering for James)
Adult L and XL also available

Teeny Tears, inspired by Ruby

PPROM Queen: Erin

Erin also experienced PPROM. When her waters broke prematurely at 25 weeks, little Ruby was delivered via c-section the same day.

After losing Ruby, Erin desperately wanted a new hobby, so she learned to sew. In Ruby’s memory, she got involved with the US organisation Teeny Tears, sewing tiny diapers for them. Teeny Tears are incredible, they provide tiny flannel diapers, mini blankets, and no-sew stockinette hats at no charge to hospitals, funeral homes, and bereavement support organizations for families that have suffered the loss of a preemie or micro-preemie child through stillbirth or NICU loss.

Erin’s beautiful creations, in memory of Ruby

Erin’s part of the group of North American loss mums I’ve been speaking to since Summer died and when she highlighted this organisation, I got in touch with them immediately.

When Summer was born, the hospital were wonderful. They wrapped her in a lovely white knitted blanket (I remember loving that. White is a colour I would never buy for children. I get it from my mum, the mantra that white gets dirty so easily! I love that they didn’t mind that she would get a blanket mucky!). When Summer died, we were given some lovely items to take home – an Aching Arms bear and a 4Louis box – but there was something I found really difficult, it was leaving Summer without anything.

Most parents walk into a hospital with a baby bag packed. When I walked in, I wasn’t prepared. So when I had to walk out, I had nothing to leave with her. I really struggled with that. I said to James “I want to leave her with something, but all I have is my jewellery, a hairband, my pyjama top…”. I felt so guilty about that, about being so ill-prepared, but how could I have been prepared? This is why Teeny Tears really appealed to me, because I just KNOW how much a tiny nappy and a tiny hat would have meant to me. It would have meant the world, to have been able to dress Summer. It’s important on so many levels – having clothes that fit her, would have made me feel less alone, legitimising her and the situation somehow. I really do believe that being able to put a nappy on her, would have helped me own the situation a lot earlier than I did – dressing your baby is a powerful act. These simple items would have ‘normalised’ the situation somehow, showing me that the world saw her as a baby, acknowledged that she was here, serving to explain to me that this was not a one-off: “these items exist, because your baby exists”.

Teeny Tears are clever, they make sets – two hats and two nappies: one to leave with the baby, one for the parents to take home as a keepsake. When we cremated Summer, I put one of my bracelets in with her. I bought another, so I have the exact same one that she had. THIS is why Teeny Tears resonated so much with me. Theirs is an act of kindness I feel passionate about.

So I contacted the organisation, asking if I could order some of their nappies, blankets, clothes and hats for the hospital where Summer was born. I was absolutely blown away by their response. They sent me a huge parcel – from the USA – with enough items to clothe EIGHTY PRE-TERM BABIES! Eighty! They didn’t even let me pay the postage. I cannot tell you how incredibly grateful I am. I just KNOW how much this will help other families. Our plan is to now hand these items to the Bereavement Midwife at our local hospital and for her to distribute the clothing around the North London hospitals. In a final touching act of kindness, Teeny Tears sent items for Summer’s keepsake box, and added cards to all of their items, with a note-card to say the donations were made in memory of Summer. I have since made a donation, even though they asked for no such thing. I am so incredibly touched by their kindness and so proud of my girl.

The huge box of items that Teeny Tears sent to me
So many beautiful items to be donated to North London hospitals

PPROM Queen: Leah

While I’m here thinking about all the North American moms who I’ve ‘met’ along the way, I’d like to mention baby Eliot: Leah’s little boy, amongst all the girls. I bet this little stud is loving it, with the attention of Summer, Coral and Ruby, all for himself. I hope y’all aren’t causing too much mischief together! If Eliot’s anything like his mom Leah, Summer’ll be head over heels for his eloquence and wit.

Coral, Ruby, Summer and Eliot are all named on the fundraising merchandise for Making Waves for Coral, so please take a look and consider buying some of the items. Remember, if you’re UK based, know me ‘in real life’ and would like to place an order, let me know so that we can do a bulk purchase to save on postage.

In memory of all these babies, let’s make some waves!

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