info@efcni.org

“Tiny miracles” – the first Family Centre in Sofia

A guest article by Petya Bankova from the organisation Our Premature Children

Since 2012, the “Our premature children” Foundation actively supports preterm born babies and their parents through community building, spreading of information about preterm birth and related topics, improving the conditions in which babies are cared for in the NICU and building up close collaboration with professionals to advance neonatal care and practices.

The Foundation is an active advocate for the cause of preterm birth and works together with the institutions to improve national policies in the field of neonatology and long-term care for preterm born children, as well as establishing a national programme for follow-up, prevention and early childhood intervention of preventable and treatable complications caused by preterm birth.

What has been achieved?

The Family Centre is our most ambitious project so far and opened its doors on the occasion of World Prematurity Day 2017. Our intention is to deepen the support we provide and broaden the range of services to help families.

At the Family CGraphic of a light houseentre parents can consult specialists in the field of early child development – psychologists, speech therapists, early intervention and motor development specialists, a music therapist, an occupational therapist and breastfeeding consultants. Parents and children have the opportunity to visit psychotherapeutic groups. Various other group activities are held regularly: art-studios, play groups, musical activities, lectures on topics related to the care of preterm born babies, and trainings for parents.

Family Centre services and specialists support parents in terms of the follow-up, prevention, early detection and early intervention of conditions typical for preterm born infants such as: difficulty in speech development, motor development and coordination, impaired memory and concentration, dyslexia, dyspraxia, dyscalculia, as well as emotional and psychological problems. All of these can be prevented or their impact on the child can be drastically reduced if they are detected and addressed timely.

 


Challenges

The biggest challange is financing and promoting the centre. Maintenance costs for the Family Centre amount to approximately 35,000 Euro per year. Since our specialised services will only be partially paid by the parents to remain truly accessible, we are working hard for every donation that helps us to become sustainable and to grow so we can continue to carry out our mission.

Conclusion

Our goal is to create a community and space in which both, parents and children feel protected, where they can address their worries and their specific needs are met with understanding and genuine support.

Special thanks to
Petya Bankova from the organisation Our Premature Children
petya(at)premature-bg.com 

Read more

Against all odds

An interview with Gert van Steenbrugge and his preterm born daughter Anja

Gert and Anja van Steenbrugge

In 1989, Gert van Steenbrugge became father of Anja. Due to the HELLP syndrome her mother developed, Anja was born by cesarean section at 26 weeks of gestation, weighing 800 gr. More than 20 years later, she successfully completed her vocational education and now she works for a well-known restaurant in Voorburg. EFCNI had the chance to ask them some questions about their experiences with the challenges of preterm birth, with a special focus on the topic Follow-up and continuing care. 

How did healthcare professionals and teachers support Anja’s development?

Gert van Steenbrugge: Throughout her life and in specific after care programmes, Anja was supported by a considerable number of professionals, such as – of course – neonatologists/pediatricians, a rehabilitation doctor, physiotherapists, a child neurologist, an audiologist, a speech therapist and an eye doctor who operated her twice for an eye correction. During her time at school, she also received extra support. At the beginning of her professional career, a job coach supported her at the workplace.

Gert & Anja van Steenbrugge (c) private

All in all, we are glad that all these professionals and teachers at schools of special education strongly supported Anja, which resulted in a young adult who has her place in society and enjoys what she has reached.

Anja, is your preterm birth something you deal with often and does it affect you still?

Anja van Steenbrugge: Though my hearing aids and additional equipment are very helpful, my hearing disability has a great impact on my social and professional life. The cerebral palsy causes that my work pace is slower than my colleagues’, and complicated instructions are sometimes hard to understand for me. 

Another typical outcome of my preterm birth is my short stature. I stopped growing at a height of 1.58 m. Thus I’m a small women and I look younger than I am in fact. Years ago at the age of 21, I visited a dance festival, and had to show my identity card, because they didn’t believe that I was 18 years of age. However, I perceived moments like these as funny rather than problematic. Practically spoken, my height sometimes hampers my functioning at work in the kitchen, because I cannot reach objects on higher shelves and need a stool or help of a colleague. The same may happen in the supermarket with items that I cannot reach, so I need help from another customer.

Did Anja have to face obstacles or difficulties in her childhood and youth?

Gert van Steenbrugge: Caused by her preterm birth, Anja has cerebral palsy resulting in several developmental problems. The most noticeable ones are a severe hearing disability (60-75% hearing loss) and physical limitation (mild unilateral paresis). When Anja started school, it turned out that she had cognitive and learning impairments. Particularly imprinting of difficult words and foreign languages was and still is difficult for her. But through learning by practice and at a slower pace, Anja developed well and was able to complete her education as a cook.

Within the first months after birth, when Anja was discharged, the great concern was that she couldn’t hear at all. Therefore, we took her to the audiologist in her first year of life and to our great surprise, after specific tests, Anja showed hearing residues. This offered the chance that she would be able to develop speech, which fortunately happened after many years of intensive training with speech therapists.  

What milestones of her development do you remember?

Gert van Steenbrugge: One big milestone was the fact that, in spite of the prediction of the neurologist, Anja was able to walk normally, although she needed support from physiotherapists for many years. Although the rehabilitation doctor was about to prescribe a customized bike, she even learned to ride a ‘normal’ bike, albeit later than her peers.

In addition, we as parents were very glad that with better prospects of speech she could move from an institute for deaf children to a school for special education of children with hearing impairment. 

At the age of 27, Anja left her parental home and was offered a nice apartment, where she has lived with limited guidance of care providers. This was, for Anja as well as for us as parents, a great and important step in her life. Certainly, it was the ultimate milestone: the moment she started to live independently.

Anja, what are your achievements you are most proud of?

Anja van Steenbrugge: I am most proud that I did well at school and became a cook. I am very happy that, in spite of my limitations, I have a job and was accepted as cook in a well-known restaurant where I can prepare nice dishes for the guests. What I’m also proud of is my nice home, where I can live my own life being independent and do my housekeeping myself.

In addition, I am a member of a patient organisation for youngsters with hearing impairment, where I met friends. I love the activities and weekends with them. Finally, I became a volunteer and help to organise activities, such as a cooking workshop. 

Do you remember specific aftercare routines?

Anja van Steenbrugge: During my life there were numerous doctor consultations, but fortunately, as time went on, it all became less frequent, although reasons for doctor’s visits always remain. Of course, I remember a lot of aftercare moments, among which were painful treatments by the physiotherapists, numerous examinations by the eye doctor and optometrist, and an MRI examination. Oh yeah, I will never forget the day I was in a hospital bed for hours waiting for an eye surgery and heard that the operation was cancelled, because of an error in the operation scheme, causing no anesthetist available. I went home and had to wait another two weeks before the operation was scheduled again.

We warmly thank you for this inspiring and encouraging interview! 

 

Read more