Comfortable seating systems afford the greatest possible support and mobility
Safe support while standing increases both physical and mental well-being
Robust and light walking aids increase mobility
Safe and comfortable solutions for the transport of disabled children
Mobile toilet and bath chairs provide helpers with the best working conditions
The right accessories are important in obtaining the correct position
Seventeen-year-old Camilla and her partner Mathias’ relationship was still relatively new when their life was suddenly turned upside down and Camilla unexpectedly became pregnant. Suddenly, they had to become parents to a girl born prematurely in week 30 of Camilla’s pregnancy.
Here you can read their story told by super cool mum Camilla who, at an extremely tender age, has overcome more challenges than most parents – as tiny Isabella is suffering from several serious complications following her early arrival.
Early May 2012, a Tuesday afternoon to be precise, Mathias and I find ourselves in a maternity ultrasound waiting room in the outpatient clinic at Aalborg University Hospital. Completely unaware that in a few months’ time we would end up spending hours, days, nights – even months – at this same hospital. Unexpectedly, at the age of 17 and while on the pill, I had become pregnant in a relatively new relationship with 19-year-old Mathias.
Everything was going according to plan, and around week 25 – by joint agreement with the school and the midwife, I went down to half time – when I begin getting false labour pains. Still, they gave us the go-ahead to take a short trip at the end of August. The last time there would just be the two of use, 12 weeks before the baby was due. A week later, we landed in Denmark again, back to the daily grind and the waiting game.
Out of bed, off to school, home to take care of daily chores, have supper ready for Mathias when he gets home from work, relax, lights out, repeat.
Friday, 7th September, I felt sick, was tired, off colour and had pains in my pelvic region. I thought it was probably the onset of pelvic joint pain and decided to spend the day resting at home on the sofa – that could only do me some good.
Early afternoon, I wake up and decide to take a shower. Ten minutes later, my water breaks.
Totally confused and without the slightest idea of what is happening, I Google like mad “Can my water just break suddenly like that? Without any contractions? My online search didn’t help me much, so instead I called Mathias at work. He doesn’t beat around the bush; “Why didn’t you call the maternity ward before you called me?”
As the saying goes: ‘there are no stupid questions – only stupid answers’. I really didn’t know why. Time and my brain must have frozen for a moment.
Mathias just managed to get back from work before the ambulance arrived and together we were driven to the hospital’s maternity ward. Beyond spontaneous rupture, there are no other visible signs that our little daughter is planning to arrive ahead of schedule. So I receive lung maturation and antibiotics before being moved to another ward where I am to remain bedbound for four weeks until labour is to be induced in week 34.
Things don’t go according to plan, however, and the next morning I am moved again to the maternity ward with powerful, frequent contractions After 11 hours of contractions, an epidural (thank God for that) and a monumental lack of sleep, Isabella was born at 7.03 p.m. Roughly ten weeks before she was due. The most adorable little girl weighing 1,452 g and measuring 42 cm.
I hardly remember anything from that day – either during or after the birth, but I’m told the sun was shining and that makes me really happy for some reason.
Isabella was so perfect, tiny and fragile as she lay sleeping in the incubator. I remember I was the first one to look at that tiny person lying there, her body covered in electrodes, CPAP, drip, stomach tube and various wires and plasters here, there and everywhere. It was so incredibly difficult to relate to the fact that the tiny infant lying inside was our daughter. It took a long time for reality to hit home. The first days were confusing – the whole thing was surreal – not to mention that indescribable feeling of new-found love that just kept growing and growing inside me.
When Isabella was born, she had problems with her blood sugar, which is why they decided to prescribe insulin and antibiotics to ward off a suspected infection. After only a few days, her levels normalised and she was taken off her medication. Only a few days old, the doctors discovered a heart murmur and a subsequent scan revealed two small holes which were thought to be unimportant. But they also found a small cerebral haemorrhage, which they likewise thought was insignificant. Isabella repeatedly received light treatment for jaundice – something that is quite normal for such a tiny baby. All that mattered was that Isabella grew to be strong and learned to eat by herself so we could take her home. It wasn’t easy, and despite being happy with her feeding bottle, Isabella found it hard to put on weight.
But finally, she managed to gain and after two long months, we took our daughter weighing barely 2,400 g home with us.
There we were in our apartment – Mathias and I, 18 and 20 years old, respectively – with our two-month-old baby daughter in our arms. No wires, strange sounds, alarms or nurses running about the place. Just the three of us – it was fantastic. I think this was the first time it hit me that we were a real family; it was the best feeling in the world. We were doing fine at home and soon found a steady rhythm. After all, it didn’t require that much. Isabella was a very delicate little girl who couldn’t stand light, sounds, smells or lots of people so we spent most of the day at home in the apartment. A reasonably manageable, repetitive but nonetheless wonderful daily routine.
It wasn’t long before Isabella became ill – in December that same year. Time and time again, we took her to the doctor and emergency as her coughing fits grew worse and worse. And time and time again, we were sent away with the same message, namely that she was probably just suffering from a cold and that because she was so small it would take longer for her to recover.
On New Year’s night, I was met by a sight I’ll never forget. Mathias was standing in the kitchen, holding Isabella in his arms. She was no longer breathing after a severe bout of coughing. I looked at her blue, lifeless body as I rang for help. Despite Mathias quickly reviving her, it felt like an eternity. We were driven to the hospital in an ambulance and put in a children’s isolation ward. We repeatedly found ourselves in the same situation – with a baby that couldn’t breathe, but who quickly recovered with the help of an oxygen mask. Isabella had become infected with a bad case of whooping cough, which was diagnosed a little late in the day. The longest two weeks of my life were spent in an isolation ward before Isabella recovered sufficiently (with the help of medication) to return home with us. It hurt more than I can say to see her suffer the way she did, but it was something we had to go through – and we did. It took a long time to get over, but after ten weeks, Isabella was her old self again.
My maternity leave seemed to drag on. Not that I didn’t enjoy it, because I did. I enjoyed (and still enjoy) every moment with my little girl, but all the limitations associated with giving birth to a premature baby posed a challenge. Isabella was easy to care for and happy as long as we were in familiar surroundings.
Despite her increased sensitivity and slow development, Isabella has always been a happy, easy-going little girl, which made everything that little bit easier on us.
Because of my studies, Isabella had to begin in day care in August 2013, only 11 months old. It went even better than I could have hoped! The sweetest woman opened her home to our fragile child. She researched everything, took extra courses and was completely prepared to meet the challenge of looking after Isabella. Because of Isabella’s situation, it was decided that she should only share day care with one other child, namely a girl her own age.
The older Isabella grew, the clearer it became that she was different from other children. It wasn’t just her extreme sensitivity – her motor skills were also poor. Throughout the first year we were told that Isabella’s slow development was due to her premature birth and her whooping cough – and we believed this. Without a care in the world and with a winning smile, we repeated the same message to all who asked why Isabella at the age of twelve months couldn’t sit, crawl or anything else – it was completely natural given her situation.
Isabella was assigned a physiotherapist, who came twice a week and trained with her. She was also the first one to suggest that Isabella was suffering from spastic cerebral palsy. Her observations proved to be spot on.
Her very first visit to the neuropediatric ward confirmed the diagnosis; bilateral cerebral palsy. A brain injury that affects all four limbs to a greater or lesser degree.
Strange though it may sound, the diagnosis came as a huge relief. It meant everything to us, and it meant that Isabella could now receive the help and support she needed.
A LOT HAS HAPPENED SINCE THEN;
I could go on endlessly about how we reached where we are today – so here goes:
Isabella is now a little over three years nine months. Her spasticity mainly affects her legs, particularly the left one, but her hands function almost normally despite minor involuntary movements. She is now affiliated to a coronary care unit (which continues to monitor the two holes in her heart) as well as an outpatient eye clinic, a neuropediatric unit and an orthopedic surgery unit. Every third or fourth month, Isabella goes under anesthesia so she can be given Botox injections to reduce tension in both legs. The effect, while good, usually lasts for about a month!
Last August, she began in a small but MARVELLOUS observation and special needs nursery in Aalborg where she is surrounded by skilled educators, physiotherapists, occupational therapists and many other specialists. She is together with other children who have their own unique sets of challenges. It is a challenging but rewarding environment which Isabella thrives in.
Isabella is still a very SENSITIVE little girl. It doesn’t take much to knock her off her perch – which is quite normal for her type of brain injury.
Every morning begins in the same way – I set my phone alarm for: 6.35 a.m. Time for Isabella to get up.
6.50 a.m. Time for Isabella’s breakfast. 7.10 a.m. Dress and clothe Isabella, brush her hair, etc.
7.20 a.m. On with her coat and off to catch her bus, which picks her up every morning over by the car park.
When Isabella arrives at the nursery, the whole process repeats itself: the same daily routine without exceptions. If I forget to set the alarm, if the ‘wrong’ grown up greets her at the nursery, if there is s a child that behaves differently than normal or something similar, her world comes crashing down and all hell breaks loose in a matter of seconds. If that happens, there is no quick fix, no way of distracting her. Patience is truly a virtue, and we therefore have to wait until Isabella has finished crying and is ready to talk about what happened before we can move on.
Often, it’s the small straws that break the camel’s back.
That’s what hurts the most. The uncertainty that we never know what kind of girl we are going to pick up from the nursery. There is rarely a middle ground – either she is tired, upset and very irascible or she is the happiest and most loving person you could ever hope to meet. Unfortunately, there are often just as many – if not more – of the down days than those when the sun is shining and Isabella is bubbly and on top of the world.
That said, Isabella is a little ball of sunshine herself! No two ways about it. She is the most wonderful little girl, a princess with a capital ‘P’ and a personality of pure gold. She has oodles of drive and determination, which in itself can be overwhelming at times – and it’s clear that she finds it hard to express all this when her world can come crashing down at a moment’s notice. In a repetitive daily routine such as ours, the days often become blurred – both the good and the bad – but we remember both and are grateful to be alive. Nothing was as we expected it to be, but that’s okay. We are young with our whole lives ahead of us – perhaps not the life we imagined, but overall a rewarding, learning experience even on the stormiest of days. No matter what, every night we say goodnight to a little girl who showers us with love and kisses before she tells us how much she love us. What could possibly be better than that!
By the way, did I mention that Isabella is no longer an only child? I don’t think I did. In November 2015, she was joined by another darling little girl. After 11+ weeks of being constantly bedbound, Olivia was born five weeks prematurely – 2,610 g of pure love. After roughly two weeks’ hospitalisation and a subsequent fight to put on weight, we were allowed to take Olivia home – once again a baby weighing in at 2,400 g. A happy, contented child who – despite copious amounts of vomit and the usual array of complaints that newborns display – is absolutely perfect in every way.
Isabella LOVES her baby sister! (As do we). Even though it can be difficult sharing and it sometimes feels almost too much having a second child to care for, she is a source of endless joy for Isabella.
Olivia is still very young and only time will tell how she develops and whether her premature birth will have any lasting consequences. But we are positive and hopeful, and try to prepare for the possible problems that may arise given the fact that Olivia will definitely overtake her older sister big time at some point.
Above all, it’s about finding a workable daily routine now that my maternity leave will soon be over and two children will have to be dropped off every morning and picked up every afternoon, be cared for – while still making sure there is time for all the practical chores, school, work, time off – as well as each other.
My thanks to those of you who have read this FAR! It’s not just hard – it’s also a relief to open your heart and share.