UAE-based German expat: ‘The first two years of my daughter’s life were spent in hospital’

The first injection came hours after Aurelia was born as her mother lay rigid on a hospital bed disbelieving the sudden turn of events.

“I had a perfect pregnancy and approached it like most things in my life in a rather structured, Germanic manner: I read all the books available, took all the vitamins, exercised and mentally planned the next 18 years of my daughter’s life,” says Isabel Sander-Reeves, a German expat based in Dubai.

Soon after the emergency C-section, that joy turned to despair – the doctors called for blood transfusions over and over, so much so that at one point, 24 hours into her life, they had run out of the O negative blood type she needed. As needles pierced her tiny delicate arms, Aurelia cried out – but her mum couldn’t comfort her; the operation had left her bed bound.

“As the lab in the hospital I delivered had limited capacities, my husband was sent to drop vials of her blood at the lab of another hospital for genetic testing. So while I was unable to get out of bed after the C-section, our baby was ion NICU [neonatal intensive care unit] and my husband was driving across town,” she recalls.

The worst part of the ordeal was not knowing why – Why had this happened to baby Aurelia? What had caused this need for a transfusion? What was going on? The doctors seemed almost as baffled as the parents as Aurelia fought for her survival.

Within days of being born, Aurelia’s liver and spleen were grossly enlarged, her lungs were under pressure from the enlarged organs and she would not stop consuming platelets, recalls Sander-Reeves.

“The treating doctor told me in no unclear terms that he did not believe our baby could be fixed – but that we could always have another one,” she says.

On day nine, Aurelia was transferred to another hospital, one with its own blood bank and oncology unit. “Within the first 24 hours, she had a bone marrow aspiration and a central line fitted. She was seen by many experts and within days we were given a tentative diagnosis [hemophagocytic lymphohistiocytosis] and the advice that she would need to travel abroad as she would likely need a stem cell transplant.”

“We were sat next to our baby, frantically trying to save her. We reached out to hospitals in Germany and the UK, called Medevac suppliers we found online and tried to arrange funds to make any of that happen,” says the now 42-year-old.

“We eventually decided to fly our daughter to Freiburg in Germany. The decision was made on a gut feel. I had spent months there as a preemie,” she adds.

Securing funds

“My parents transferred the 25,000 Euros (Dh104,577) that the hospital required to admit her as she had no insurance cover for Germany at this stage. It simply wasn’t money we had lying around,” says Sander-Reeves.

Aurelia was 19 days old when she was rushed to Germany where the oncology team at her new hospital home was waiting to screen her; they started her on high dose chemo therapy, steroids and immune suppressants but whatever this condition was – suspected hemophagocytic lymphohistiocytosis - it was so aggressive that there was no remission.

“When we arrived in Germany in October, in November they started looking for a donor already. And rather quickly identified three potential donors in the data base and then in December, it was decided that she would definitely go for transplant,” Sander-Reeves says.

“So we started preparing for transplant in January and then her first donor actually fell sick.” The news shook the whole family who were seeing their little girl jabbed and poked and hurting. “When her first donor fell sick, that was a big blow to the system, because you are preparing yourself for something to start and it gets delayed and you get this feeling that the second donor may not be such a good match,” explains Sander-Reeves. “The second donor in hindsight was the perfect match for her.”

Preparing for the transplant

The transplant was set for February. “What happened then before bone marrow or stem cell transplant was that the patient gets a very high dose of chemotherapy and other medication and it wipes out their entire immune system and all the bone marrow that’s in the body. So you are essentially going through zero immunity and zero blood building system so that’s really a very critical time. She then received her stem cell transplant on the 11th of February,” says her mum.

“She had a whole range of complications and one of the biggest was she had to be tube fed, she had stopped eating because she was too weak and for a while she was only given total parenteral nutrition, which is [administered] via the vein. That took a month to deal with. Later she developed auto immune antibodies and so had to be placed on very high dosage of steroids which has a lot of side-effects, and so eventually she was released from hospital for the first time when she was 11 months old.”

The stints in hospital were far from over. Sander-Reeves says: “I stayed with my parents in Germany for quite a while and then in her second year, we were in and out of hospitals; we had to have surgery for trigger thumb and then we went to a specialist clinic in Munich because we had to get rid of the feeding tube so that was another three months in-patient.”

“Her immune system was extremely weak and from the steroids that she received something called Cushing’s disease, which is pretty much a side-effect of the steroids – it pretty much left her sleeping a maximum of 30 minutes and if she wasn’t sleeping, she was screaming. Long-term impact will be on bone density, teeth. There are a lot of long-term side-effects that you only come to know as you go along,” she adds.

“One day where she was in treatment and she went into anaphylactic shock and she had the hospital crisis team in the room because her vitals were just dropping and I remember being in bed that night and I think I must have had a shock but it was a physical reaction to the stress of the day,” recalls Sander-Reeves, speaking of the physical toll this journey to health took on her.

“I went from being a very factual, relaxed personality to being on edge perpetually. And I was really taken aback at how it’s not spoken about even when a family is in a situation of prolonged and acute stress no one talks about mental health and that needs to change,” she says.

The changes in behaviour felt subtle, necessary even – and they were at first. “Obviously we were very protective of Aurelia when she first got released from hospital and if we went to a playground and I saw a child with a runny nose I’d leave. I wasn’t able to touch a door handle any more, I wouldn’t allow her to climb anything because I was worried that she’d hurt herself,” she says.

It took a therapist pointing out that too much mollycoddling may be the worst thing a parent can do to a child for Sander-Reeves to begin to understand what was happening. “That was very eye opening, that my fears were holding her back from developing normally and it wasn’t fair to her to hold her back from being a normal child, when she fought so hard for her survival, so that was a long journey with me working on myself. I had some EMDR [Eye Movement Desensitisation and Reprocessing] therapy, which I think is a very helpful form of therapy for post-traumatic stress disorder and now really coping is an ongoing thing, it doesn’t leave you, what we experienced and what we’ve seen doesn’t go away.

“And COVID-19 has been bad for everyone but it’s been particularly stressful for us, but it is just working on it and being aware and speaking about it and being able to say, ‘this is very triggering for me right now and a lot of things are making me uncomfortable and this is how I’m dealing with it.’ I feel that if you speak about your fears and your worries, most people are actually incredibly respectful and supportive of it. We need to talk about it a lot more,” she says.

“Our daughter was finally released an eating child just before her second birthday. We eventually returned to Dubai when she was 26 months old. She had an intravenous immune globulin transfusion the day before we left which would allow us a few weeks to find a suitable hospital in Dubai to handle the coming transfusions.

“Our daughter turned five this September! She is now a happy and mostly healthy five year old. She has had almost two years of desferoxamin therapy to rid her of excess iron in her system. Last April was the first time in her life she did not take any medications! The harsh chemotherapy prior to transplant has left its marks. We do not know if her adult teeth will be fully developed, if her thyroid will be large enough to produce sufficient hormones or if she will relapse. There are a lot of unknowns in our life but there is also eternal gratitude that she is alive and our miracle,” Sander-Reeves said four years ago at a medical conference in Dubai as Aurelia swapped hospital gowns for school uniforms.

This feeling of gratitude, she says in our interview, helped the family even on the darkest of days. “From the first day she was born we were acutely aware how fortunate we are … we were very acutely aware that we were very fortunate to have access to medical care, ability to take her to Germany for treatment there, the ability to access the donor database and have three possible matches readily available, so we were so incredibly fortunate in so, so many ways and that gratitude that really carries you through a lot. And in the darkest times, we always made a point to remind ourselves we are just lucky,” she says.

This optimistic attitude seems to have spilled over to Aurelia who is now nine years old, studies in Swiss International Scientific School Dubai and has ambitions to be an advocate for those who can’t speak for themselves. She also has a personal motto that she’s proved in her nine years. She explains: “I always believe in never giving up. I always believe in keeping on fighting.”