When we have a mastectomy, we lose the ability to do what so many women take for granted- having the choice to breast feed our child. Today’s blog is an emotional story of love, loss and gifted milk.
The Gift of a Baby and his Gifted Milk
A handful of thematic pathways spring to mind when I consider how to begin my BRCA+ blog post. There have been so many twists and turns over the past 5.5 years, some extreme lows and a sprinkle of highs, deep dark pit holes, and moments of pure joy and gratitude to be alive, and to create further life. This all probably reads very cryptically…!
How it all began
Focusing specifically on my BRCA+ journey post-mastectomy, in the context of conceiving (and nourishing) a baby, I was incredibly fortunate to already have two healthy children before being told on the phone that I am BRCA1+. Holding my second born, a second daughter, just two days old nursing at my then natural breast, I took the inevitable phone call from my genetics counsellor, quietly and regretfully informing me that I had tested positive. She seemed almost tearful on the phone, repeating “I’m just so sorry”, but I wasn’t. Ironically, it was me that reassured her – “I’m going to be OK; I’m going to have surgery, it’s going to be OK.” I already knew firmly in my mind that I would want a double mastectomy with or without reconstruction. I also knew I wanted to nurse my daughter as I had done with my first – for nearly 3 years – much to my surprise (another story in itself!). But here lies another story I could tell – the painful and stress-ridden journey I navigated seeking preventative surgery as quickly as possible, during a global pandemic that wreaked heartbreaking carnage on the NHS, alongside seeing my youngest sister endure brutal chemotherapy, radiation and eventual double mastectomy aged just 30. My sister was battling aggressive triple negative cancer at that time.
From breast feeding to mastectomy
I fed my baby girl for nine months, switching to Kendamil formula gradually, telling myself the fact it was organic and made relatively locally is somehow better for her, and better for my senses (silly in retrospect). I didn’t want to stop feeding her, but in total contradiction desperately wanted to remove my breast tissue as quickly as possible. I eventually had my surgery, neither going flat or an autologous surgery as originally considered – but reconstructed straight to saline implants, nipples spared. The latter feature I felt ambivalent about, but my surgeons impressed on me it’s a fantastic relatively new procedure with much greater aesthetic outcomes. But there lies another topic I could elaborate on… As I am now seeking to remove my nipples four years later, owing to the effect pregnancy hormones triggered on my remaining tissue when my son was born 2.5 years ago.
“Are you finished with your gynaecological apparatus?”
Flash forward to 2021, Covid is beginning to dissipate and I’m back at work after being on extended furlough. My sister is living her life again, having fun with her early 30-something friends, back at work and nearing completion on her first house purchase. I’m now 38 with 2-year-old and 6-year-old daughters, feeling incredibly grateful to have hugely reduced my risk of breast cancer, but knowing the clock is ticking to also remove my ovaries and be plunged into surgical menopause. My gynaecologist – by far the kindest, most patient and humble consultant I have met to date in the NHS along my tumultuous BRCA+ journey – poses the dreaded question in a most sanitised way, “Are you finished with your gynaecological apparatus?”. Sat in his consultation room with my husband, as I had several times since being 7-weeks postpartum with my second child, knowing he remains patient and happy to fully follow my lead on this one, I reveal (contrary to my husband chipping in “yes, I think we are”!), that I am not quite sure. That I feel two is perhaps that bit too neat and tidy for me having grown up 1 of 6 children, that I’d so love a baby boy but am fully aware there is no guarantee I’d get one, that I know the clock is ticking for both fertility and my ovaries, that I don’t want to risk the same fate as my paternal grandma who died at 50 of ovarian cancer but don’t want to live with regret for not at least trying for a third. My mind, heart and gut were a medley of confusion and uncertainty.
Baby number three
We resolved to strike a deal. More so with my husband than with my surgeon! After securing some basic fertility tests on the NHS to explore whether IVF or natural conception would even be viable for me, rather than unnecessarily delay my second essential prophylactic surgery, it was established that I had a low egg count. I was assured however, that whilst a poor candidate for IVF treatment, my hormone levels were in check and therefore natural conception would still be a possibility. Other professionals begged to differ on this one – but there lies another twist for another day. I gave it 6 months to conceive, or I’d move on and whip out my ovaries – having known I’d given it a chance. I provisionally booked in the surgery for 6 months’ time. Conception swabs, impatience, the waiting game began. With my girls I was incredibly lucky (though less so on the BRCA front, obviously) to fall pregnant immediately. With my third, it wasn’t looking good. Then, as I was nearing the 6 month mark, approaching my penciled month for surgery, my period didn’t arrive. I took another test and saw a smiley face. I take another and stare hard at the faint blue line – I’m pregnant, and overjoyed! Then a little frightened, pangs of nervousness… what will my husband think, why have I been given this chance, am I crazy to delay surgery, to have chased this dream of a baby boy. Another baby I risk passing on my mutation to, what if it’s a girl? … so many thoughts, so many feelings all at once. But I feel so much happiness to be handed this gift.
My sister
That same week, as my husband is coming round to the idea of a third baby, and I’m taking more pregnancy tests to accept I really am pregnant again, we receive the most horrific painful news. A message in a family WhatsApp group. My sister’s cancer has returned, only 18 months after she rang the bell and finished treatment. It is now stage 4. I called my surgeon’s secretary, crying. I explain I’m pregnant, that I can’t go ahead with the surgery. I’m choking on tears. My little sister is dying. I’m confused. I’m now terrified, can I have my ovaries checked again, am I making a grave mistake?
My courageous, vivacious little sister passed away three years ago this August, just two months after it was confirmed her cancer had returned. The disease eventually stole her young and vibrant life, inflicting levels of anguish and horror words cannot even express. Just days before she died, she texted me a baby boy’s name, but we ran out of time for her to give me a girl’s. The day before she passed, I took an early blood test to determine the gender. Just over a week later, the family in deep shock at the loss of our sister, daughter, aunt – I called to check if the gender is known. It’s a miracle baby boy. And I have a name for him. More tears roll down my face, this time of comfort and joy.
Ezra
Ezra was a healthy gorgeous newborn who was so eager to arrive he chose the day of a named storm, and very nearly the hospital car park as his delivery suite! It was all such a flurry, a messy endeavour – the midwife I spoke to on the phone squashing my concern that birth was very close as I lie sideways on my bed with “you sound far too calm to be advanced in labour”. But by my third born, I knew it was time to scramble into the car, or otherwise default to the bath tub! Quite literally flying out as I was scuttled in, standing up wailing on a trolley (how dignified!), wheeled through the door frame of a hospital room. Ezra was born. It was all so fast, and my blood pressure plummeted. Bleeding afterwards and asked to lie down to receive swift stitches, my hungry baby boy is laid on to my chest for the first time. He was crying, nuzzling me, searching for food from his mother – but I knew I couldn’t give him that biologically, and felt an acute but subtle pain in my heart that had been slowly building up inside me. These sad feelings were felt in tandem with disbelief and sheer relief that my wish of having a third and final baby, a gorgeous baby boy – had come true. I thought of my sister as we lay there and spoke of his chosen name to the midwives, explaining the sorrow bundled up with his story.
“Will you be breastfeeding?”
Unfortunate questions were asked about feeding Ezra. “Will you be breastfeeding him?” one midwife asked. “She can’t” my husband quickly stated. “He needs the frozen breast milk” I quietly exclaimed, intently looking at my husband. He knew how much I’d wanted to replicate the moment I couldn’t naturally give Ezra, by feeding him another woman’s nutritious human milk. But in the end, in that hour, we had to administer formula, because the frozen milk hadn’t thawed and the hospital staff seemed unsure how best to prepare it. There were anticlimactic feelings obviously, it wasn’t the same as before with my girls, but in hindsight it didn’t matter – Ezra was healthy and feeding, that was the most important thing to cherish.
Milk Banks
The charity I received months of amazing milk from, that I fed to Ezra alongside Kendamil, is called Hearts Milk Bank. They are truly the kindest, most attentive and caring charity – and helped me adapt to and accept my different feeding journey for my son. The first delivery of milk takes place before the birth, arriving in a medical van that also delivers plasma! When it first arrived, I was waving at my front door heavily pregnant, and sent it away thinking it must be for someone else! The word ‘bloods’ was written on the side of the van throwing me off completely. The kind women who donate know they are supporting a family, a beautiful baby (or more), to thrive and develop – often in neonatal wards where babies have arrived prematurely. My case was certainly a rarer one for HMB, but no less deserving they assured me of receiving human milk. There were waves of guilt knowing my son wasn’t a poorly or premature baby, was it really moral that I also receive some nutritious human milk for Ezra? I was repeatedly reassured during check-in phone calls, as further batches were sent to me, as we paved the way together to transition Ezra solely onto formula milk that yes, he is deserving of it, and will be greatly benefiting from our mixed feeding approach.
Ezra is now 2.5 years old and continues to amaze and delight us all with his curly golden locks, his infectious grin and chirpy sensibility. He’s so bright and full of warmth and brings comfort to us all every day. I remain so grateful on numerous fronts, to so many people. But long for my sister to return, even if for one day, to cuddle him and enjoy him, along with his sisters, and to tell us she is ok.
Thank you so much. We are so grateful to you for sharing your story with us. Xx
