Natalia Hidalgo Szumiel (2 Sep 2008 - 2 Oct 2019)

In loving memory of Natalia Hidalgo Szumiel who sadly passed away on 2nd October 2019.

Natalia was born at RIE on September the 2nd, 2008 with severe and widespread brain damage. Natalia was transferred to the Neonatal Unit when she met me for the first time. I was mesmerized by her sweetness. She was beautiful and fragile. I was stunned by love and devotion.

Three days after birth, it was thought that Natalia’s death was imminent, and Mum and I were informed and went through the emotional trauma of this. Care for Natalia was reoriented to provide for maximum comfort, and we did the best we could. Cuddles, kisses, care, walk indoor and outdoors, bubble baths, baby massages,….. Every day was a Spa day for Natalia!!! “ This is nice!!” - she must have thought!! - She loved it so much that she decided to hang around for a bit longer,….. despite all the difficulties. A fighter was born!

On the 19th of September 2008, Natalia was discharged “to go home but still with serious difficulties, high requirements for supervision and care” (Neonatal Discharge Summary) where she remains cared for till the age of 8.

The complexity of her medical needs was being revealed as she grew older. From birth, Natalia was unable to coordinate swallowing which made her prone to chest infections and could not eat by mouth. Enteral feeding was via nasogastric tube and at older age gastrostomy (surgery) fed directly into her tummy. She had a very high muscle tone, source of pain and also epilepsy which were reasonably well controlled.

Unlike her vision, Natalia’s sense of hearing and touch were highly developed, which enabled her to be aware of her surroundings and others to interact and communicate with her. Natalia loved social interaction and always smiled when she heard a familiar voice.

Natalia also had quadriplegia and needed to care for day and night adequately. She had all the equipment she needed to enable mobility and integration. A wheelchair to go into the community, a standing frame to develop bone strength and other benefits, a hoist track to help lifting, bath support systems to enjoy hydrotherapy, even a car at the age of 3 to facilitate transport to holiday clubs, or collect her from school and drive her from/to respite care.

The school was one of the main pillars that hugely contributed to Natalia’s happiness.
Natalia loved going to school!! She was very fortunate to attend Oaklands School and to be nurtured by their team of specialized teachers, physiotherapists, nurses, etc.. Oaklands helped Natalia to make sense of the surrounding environment, grown her confidence and explore new things, like the smell of tomatoes or achieving turning her head in the direction of a person talking. Natalia had many friends at school and all staff members described her as a happy girl, full of smiles and a delight to work with. She will be greatly missed at School.

In 2016, Natalia moved from the family environment into NHS managed nursing home as a full-time resident to provide for her increased care, particularly at night. The dedicated staff at Sundach and then Calareidh took Natalia under their wings and nurtured her in a family-like setting with the tender love and care that any father could ever hope for and all children deserve.

Since January 2019 Natalia was diagnosed with a critical condition, and her care was reorganized to provide for her maximum comfort. On September 2nd a huge surprise party was arranged at Calereidh for Natalia’s 11th birthday. Over 50 people came, most dressed as a princess (Except dad :) ), to celebrate with Natalia and she was over the moon!! There were tons of presents but Natalia gave all the healing gift of her biggest smile ever!!! What a beautiful memory!!!

It is thanks to the hard work, help, support, care and love given to Natalia by family & loved ones, the staff at RIE, Sick Kids Hospital Edinburgh, Oaklands School, Sunndach and Calereidh, that provide Natalia with the opportunity she deserved to be happy.

In return, Natalia’s strength and resilience have provided unique positive effects and make individual contributions to many other families and family life. It has provided opportunities from personal growth and influence many different people to get a more balanced understanding and appreciation of what people are about — accepting diversity and people's behaviors. Enhance learning to open the heart and be more loving, calm, caring, warm, independent and less selfish.

As a father, I have the experience of pride and joy at a deeper level. It has strengthened the relationship with my younger son and brought us closer. My son has become stronger and more resilient, and now he has the memory of her sister to follow as a role model.
All professional teams involved have gained a positive experience, and they earn pride and satisfaction from having made Natalia’s life (and many others) happier.

Furthermore, these are transferrable knowledge. Our experiences can now be shared and transmitted to children and promote diversity and equality, to parents affected by disabilities to help them cope better throughout the struggle, to fundraise and encourage projects that will enhance the life experiences of kids at a disadvantage.

For those that wish to make a donation in memory of Natalia, please make it to Natalia’s school, Oaklands – see donations section of Obituary for contact details – The donated funds will be allocated for the construction of an outdoors sensory environment in where children with disabilities will be able to experience the diverse weathers within a safe environment protected from the elements.

Donations for this project can be made by bank transfer directly to Oakland’s School or to the family - details bellow:

OAKLANDS

Royal Bank of Scotland
239 St John’s Road, EH12 7xA
Short Code: 831847
Account: 00645489
IBAN: GB25RBOS83184700645489
BIC: RBOSGB2L

FAMILY

Bank of Scotland
Short Code: 804661
Account: 01068400

Many thanks to All,

Roberto Martin Hidalgo