{"id":217629,"date":"2025-06-27T03:59:15","date_gmt":"2025-06-27T03:59:15","guid":{"rendered":"https:\/\/www.europesays.com\/uk\/217629\/"},"modified":"2025-06-27T03:59:15","modified_gmt":"2025-06-27T03:59:15","slug":"we-wanted-a-baby-so-they-could-act-as-a-transplant-donor-for-our-seriously-ill-daughter-reveals-mina-holland-it-was-a-minefield-but-what-happened-next-will-make-you-believe-in-miracles","status":"publish","type":"post","link":"https:\/\/www.europesays.com\/uk\/217629\/","title":{"rendered":"We wanted a baby so they could act as a transplant donor for our seriously ill daughter, reveals MINA HOLLAND. It was a minefield… but what happened next will make you believe in miracles"},"content":{"rendered":"

When the moment comes for the anaesthetist to place the mask over my little boy\u2019s face, I falter.<\/p>\n

While I\u2019ve witnessed my daughter, Vida, go through the same thing on multiple occasions, her medical condition means invasive hospital procedures are necessary to keep her alive, making it easier to fight my protective instinct.<\/p>\n

But in two-year-old Gabriel\u2019s case, it is not medically necessary \u2013 at least, not for him. The reason my sweet, sparky, wilful boy is in hospital is so he can be a donor for his big sister. My husband and I have chosen this for him \u2013 and that knowledge is quietly devastating.<\/p>\n

Vida has an ultra-rare genetic blood disorder called Diamond Blackfan Anaemia Syndrome (DBAS). This means she can\u2019t produce enough red blood cells and currently relies on life-saving blood transfusions every three weeks.<\/p>\n

Gabriel is being put to sleep so that some of his stem cells can be harvested from the soft centre of his bones, the marrow. By this evening, these stem cells will start being infused into four-year-old Vida in the hope they will take root and kickstart her ability to produce healthy red blood cells of her own.<\/p>\n

If it works, this will give her a future that doesn\u2019t tether her to hospitals. The chance of a life in which transfusions, and the medicines that treat their dangerous side-effects, become a thing of the past.<\/p>\n

I don\u2019t have anxiety around the procedure itself, having watched Vida go through general anaesthetics and bone marrow biopsies many times before.<\/p>\n

But until we got an actual date for it, we downplayed the weight of what Gabriel would endure \u2013 the repeated blood tests, the general anaesthetic, the inevitable soreness in his lower back where the stem cells would be drawn and the months of iron supplementation that must follow.<\/p>\n

Now, as I gaze at my little boy looking so vulnerable, what we are putting him through is all too real.<\/p>\n

\"Mina <\/p>\n

Mina Holland with her daughter, Vida, who has an ultra-rare genetic blood disorder called\u00a0Diamond Blackfan Anaemia Syndrome (DBAS)<\/p>\n

This is my son giving a part of himself to my daughter in a way that has the power to completely change the course of her life.<\/p>\n

While both my husband Freddie and I would have happily swapped places with Gabriel, he is the one who is a match, not us. My sense of responsibility at our choice \u2013 our agency in all this \u2013 is dizzying.<\/p>\n

But as he drifts into unconsciousness, I still don\u2019t doubt this is absolutely the right thing to do.<\/p>\n

Today, stem cells are embedded in the language of our family but, four years ago, I couldn\u2019t have told you what they were \u2013 these building blocks of blood and of life, tiny but potent, capable of becoming red cells, white cells, platelets.<\/p>\n

Freddie, a musician and sound designer for TV and film, and I, a journalist, met Bridget Jones-style in my aunt\u2019s kitchen between Christmas and New Year 2013, our parents having friends in common.<\/p>\n

We planned a family together from the start; Vida came along almost two years into our marriage.<\/p>\n

The pregnancy was smooth until the end, when scans started to show high readings that suggested my placenta might be failing (in hindsight, we suspect this may have been linked to her condition, although we will never know for sure). She was delivered by caesarean at 37 weeks.<\/p>\n

Vida was 11 weeks old when we first discovered, at what was meant to be a routine hospital follow-up, that something was seriously wrong.<\/p>\n

It was supposed to be a box-ticking appointment, the kind that disappears into the fog of early parenthood.<\/p>\n

But the moment the doctor saw her and registered the startling pallor of her skin, she was admitted immediately for an emergency blood transfusion.<\/p>\n

When the doctor asked me: \u2018Did you not see?\u2019 I felt the wall, the ceiling, faces and furniture begin to melt.<\/p>\n

Because the truth is, yes, I had seen something \u2013 I just hadn\u2019t known what.<\/p>\n

I had noticed how other babies were feeding better, sleeping for longer and settling into routines, while Vida wasn\u2019t.<\/p>\n

I\u2019d noticed how pale she looked during bath times, especially when I compared her skin to mine.<\/p>\n

\"I <\/p>\n

I had noticed how other babies were feeding better, sleeping for longer and settling into routines, while Vida wasn\u2019t, writes Mina<\/p>\n

But as a first-time parent I assumed it was just the contrast between a baby\u2019s soft complexion and an adult\u2019s skin. I didn\u2019t realise it was a sign of severe anaemia.<\/p>\n

And, in any case, each time I did voice a worry about her development, my mother\u2019s intuition was met with smiles, reassurance and kindly dismissals.<\/p>\n

The GP, the midwife, the lactation consultant \u2013 they\u2019d all told me she was fine and, of course, I wanted to believe them.<\/p>\n

My concern got absorbed into the narrative of new motherhood; brushed aside as exhaustion, anxiety, hormones. When the DBAS diagnosis came seven weeks later, we learned that without transfusions every three weeks, she wouldn\u2019t survive.<\/p>\n

Gone was the parental routine I\u2019d imagined, of baby groups and meeting up for coffees and moaning about the trials and tribulations of new motherhood with other sleep-deprived mums.<\/p>\n

Immediately, every part of my life rearranged itself around the stark reality of Vida\u2019s condition, observing how she perked up with fresh blood and declined as she ran low again.<\/p>\n

Mornings dissolved into transfusion schedules, while afternoons got swallowed up with research as the journalist in me tried to better understand her condition.<\/p>\n

It was a problem that I, as her mother, felt was my duty to fix. The nights were swallowed by anxiety over treatment side-effects and test results.<\/p>\n

I swung between an obsessive search for hope and feeling utterly hopeless. I fretted over blood counts, second-guessing every symptom, every therapy, every doctor\u2019s opinion.<\/p>\n

It felt as if the only way to stay afloat was to dive headfirst into knowledge and options, even at the cost of my own mental health.<\/p>\n

While I scrolled through my phone, looking for answers, Freddie went to work.<\/p>\n

He also cooked, swooped Vida off for early-morning walks and researched all the stuff I didn\u2019t seem to get to \u2013 bottle brands, nappy bins, age-appropriate bath toys, even baby sunglasses.<\/p>\n

Some days I envied his ability to suspend the same heavy feelings that weighed me down.<\/p>\n

But my way of giving myself some semblance of control was to become as informed as it was possible for anyone to be, even if I felt other people\u2019s fatigue around my obsession, because DBAS became all I talked about.<\/p>\n

I learnt about the imperfect treatments for it; the significant complications that come with a lifetime of transfusions \u2013 namely the build-up of iron in the body\u2019s organs, which can be dangerous.<\/p>\n

And how Vida\u2019s bone marrow might eventually be shocked into producing those precious red cells by high-dose steroids, but at the cost of physical growth, bone density and her immune system.<\/p>\n

\"Mina's <\/p>\n

Mina’s book details what it was like caring for a baby with such a rare illness<\/p>\n

The most definitive treatment for Vida would be a bone marrow transplant. But it was risky; her entire immune system would need to be destroyed in the process. It would mean a year out of mainstream life. But if successful it would liberate her from transfusions and their side-effects.<\/p>\n

I wanted the closest thing to a fix and so, despite its risks, I was drawn to the idea of this. But for a patient or their parents to have that choice, they need either to have a matched sibling donor \u2013 the gold standard of donors for their superior genetic similarity to the patient \u2013 or to have exhausted all other treatment options, which would qualify them for a transplant using an unrelated donor from the bone marrow register.<\/p>\n

I knew which option I preferred. Freddie and I wanted another child anyway and so we started to look into having another baby via IVF, using a process called pre-implantation genetic testing that would enable us to engineer a donor for Vida \u2013 otherwise, siblings only have a 25 per cent chance of being a match.<\/p>\n

At first, Freddie was reluctant to think about another baby while I seemed so focused on fixing\u2019 things.<\/p>\n

But he also recognised how this \u2018project\u2019 (for want of a better word) was helping me to feel I wasn\u2019t impotent in all this.<\/p>\n

And so began what some might call \u2018playing God\u2019.<\/p>\n

First, we had to get approval from the Human Fertilisation and Embryology Authority (HFEA), because any embryos created would be genetically screened in order to produce a baby who would be Vida\u2019s genetic match.<\/p>\n

I was aware of the controversy surrounding embryo selection, but we weren\u2019t choosing a baby based on eye or hair colour or sex, indulging an aesthetic preference or a predilection for appearance or personality.<\/p>\n

Our child would be a much-wanted family member who happened to have a trait that could help their sister in a way no one else could.<\/p>\n

We were choosing traits invisible to the eye: stem cell compatibility that could give our daughter a better life. We wanted to give Vida the best chance we could.<\/p>\n

Who could possibly argue with that? Plenty of people, it turned out, but I limited my exposure to them, keeping my echo chamber small and validating.<\/p>\n

If terms like \u2018designer baby\u2019 take a swipe at the parents, \u2018saviour sibling\u2019 loads responsibility on to the child that results from this kind of IVF.<\/p>\n

A matched sibling could change Vida\u2019s life, but it wouldn\u2019t be their duty to do so \u2013 if they chose not to, or if it didn\u2019t work, there would be no failure on their part.<\/p>\n

Even with a perfectly matched sibling donor, bone marrow transplants are complex medical procedures, not divine interventions. But the medicine could help, so we were calling on it.<\/p>\n

In the end though, soon after the HFEA licence came through, we had to give up on the idea of IVF.<\/p>\n

My body failed to respond to the medication meant to stimulate it into producing the extra eggs needed for this treatment. It was game over.<\/p>\n

This now meant that if Vida ever needed a transplant, we\u2019d have to put our faith in an unrelated donor. Unless we conceived a matched sibling baby naturally.<\/p>\n

Thankfully, Gabriel was conceived quickly and when he was born in December 2020, we chose that name because an angel was exactly what we needed.<\/p>\n

If there is a God then he played his part, because at two months old tests revealed he was a genetic match for Vida.<\/p>\n

\"Mina, <\/p>\n

Mina, her husband Freddie with Vida and Gabriel \u2013 who, after the couple had to give up on IVF, was concieved naturally and was thankfully a genetic match for his sister<\/p>\n

But there was also no escaping how our children\u2019s early lives would now be shaped by the choices Freddie and I made.<\/p>\n

When your child faces life-threatening illness, the stakes skyrocket. Things such as deciding when to go back to work or picking the best school seem insignificant.<\/p>\n

I found myself asking questions no parent ever expects: should we risk a transplant for Vida? Should Gabriel give a part of himself, albeit a part he could replenish in time, for a chance at good health for his sister?<\/p>\n

The responsibility to get it right felt colossal, keeping us both awake at night.<\/p>\n

In the end, knowing that we had our perfectly matched boy, along with emerging research about improved quality of life outcomes for post-bone marrow transplant patients with blood disorders, we were nudged in that direction.<\/p>\n

From the start, there were systems in place to protect Gabriel, who had to be at least two to donate.<\/p>\n

He has his own consultant to assess his fitness for donation and to represent his interests.<\/p>\n

During our counselling sessions with the hospital, required before this kind of procedure, Freddie and I were asked \u2018what are the benefits to Gabriel?\u2019<\/p>\n

Our response: to have a sister who is in the best possible health for the longest possible time.<\/p>\n

Donating bone marrow sounds invasive \u2013 it is, after all, the extraction of part of someone\u2019s precious blood factory (in this case, from the core of their hip bone). But it\u2019s also virtually the same process that Vida herself had been through during many biopsies, so it felt familiar.<\/p>\n

For Gabriel, it meant a general anaesthetic and anaemia we\u2019d treat with iron supplements. Weighed up against having a chronically, increasingly unwell sister, it seemed reasonable to proceed.<\/p>\n

Still, it meant putting Gabriel through experiences he didn\u2019t enjoy. He was incensed that anyone might try to restrain him while brandishing a stethoscope or, worse, a needle.<\/p>\n

And while Vida would bounce back fast from the likes of a blood test, Gabes\u2019 mood stayed bruised by the interventions of a doctor or nurse. He would tell me that he didn\u2019t like \u2018dat red night\u2019 (the oxygen saturation monitor), or \u2018dat sharp fing\u2019 (a needle).<\/p>\n

Gabriel donated his marrow in the early morning of March 8, 2023. Vida had already endured a week of chemotherapy to wipe out her immune system and so \u2013 later that same day \u2013 her transplant began.<\/p>\n

This wasn\u2019t a quick fix. There were 15 months of hospital stays, splitting us as a family and meaning bedtime stories got told over FaceTime for one of our children each evening.<\/p>\n

We had to sanitise everything \u2013 even boiling her drinking water \u2013 and shun mainstream life in order to protect Vida from the risk of an infection she didn\u2019t yet have the immune system to fight off.<\/p>\n

\"While <\/p>\n

While the transplant seemed equal to the medical processes Vida had gone through, it still meant putting Gabriel through things he didn’t enjoy. Today both children are thriving and have a strong bond<\/p>\n

I took a period of indefinite leave from my job to become a full-time caregiver, while our world as a family shrank.<\/p>\n

But the transplant marked a very real turning point. Vida\u2019s immunity began rebuilding. Our freedoms returned slowly \u2013 playgrounds, nursery, work, piece by piece.<\/p>\n

And as a mother, I relearned how to stay present.<\/p>\n

The fear didn\u2019t vanish \u2013 Vida will always need to be closely monitored \u2013 but those months of chaos, of love and terror, shaped me. I\u2019m a better, kinder, more patient person as a result.<\/p>\n

Today, the children are four and six and both are thriving.<\/p>\n

Vida started school midway through her reception year and is doing well, despite still having many hospital appointments. Gabriel will join her in September.<\/p>\n

But their fiery squabbles notwithstanding, we see the strong bond between our kids.<\/p>\n

How, if Vida is given a snack or a toy, she\u2019ll always ask if there\u2019s one for her brother. The way that, when we pick him up from nursery, the first thing Gabriel asks is: \u2018Where\u2019s Vida?\u2019<\/p>\n

Watching them in scenarios so many parents take for granted \u2013playgrounds, swimming pools, even just drinking tap water \u2013 I am reminded these things weren\u2019t always possible; I will never stop feeling grateful that they now are.<\/p>\n

We believe Gabriel would have chosen to do this for Vida if he could, and that one day he will be proud to know what he did.<\/p>\n

It was the hardest decision we ever had to make. But we feel clear about the pay-off \u2013 for both our children.<\/p>\n

Adapted from Lifeblood by Mina Holland (Daunt Books, \u00a310.99) out now. \u00a9 Mina Holland 2025. To order a copy for \u00a39.89 (offer valid to 12\/07\/25; UK P&P free on orders over \u00a325) go to mailshop.co.uk\/books or call 020 3176 2937.<\/p>\n","protected":false},"excerpt":{"rendered":"When the moment comes for the anaesthetist to place the mask over my little boy\u2019s face, I falter.…\n","protected":false},"author":2,"featured_media":217630,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[92,368,105,16,15],"class_list":{"0":"post-217629","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health","8":"tag-dailymail","9":"tag-femail","10":"tag-health","11":"tag-uk","12":"tag-united-kingdom"},"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@uk\/114753330816806335","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts\/217629","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/comments?post=217629"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts\/217629\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/media\/217630"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/media?parent=217629"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/categories?post=217629"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/tags?post=217629"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}