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                               Effie's Story

"As parents, there is nothing more that we could ask for – there are no words that feel adequate enough to describe the amount of gratitude that we have for the people that are Siskin – the place/the people that care for, cheer for and cherish our Effie as much as we do."

--April, Effie’s Mother 

Effie in wheel chair

Effie Elizabeth was our little surprise after 20 amazing years of marriage. Although unexpected, we were excited about the new chapter and adventure before us. She was born full term following an uncomplicated pregnancy. There were no signs of distress during the birth process, but she was not breathing when she was born, had a broken clavicle and a large subdural hematoma. She was resuscitated for eights minutes and placed on a ventilator to help her breathe. She came off the ventilator within an hour but remained in the NICU.

She showed initial improvements; but, at hour 32 of her life, she began to have difficulty breathing again and was transferred to the NICU downtown. It turns out that, at some point during the birth process, she lost oxygen – she was diagnosed with Grade 3 HIE – Hypoxic (lack of Oxygen) Ischemic(Restricting blood flow) Encephalopathy (affecting the brain). She was placed on a cooling blanket for 72 hours, which is the standard treatment for HIE. However, this intervention shows the most efficacy when initiated within six hours of birth. Effie did not begin her cooling until hour 42 of her life.

It was unclear whether she would survive. However, she was a fighter and was able to breathe on her own throughout the process. She remained in the NICU for five weeks – during which time we were working on feeding. Her doctors were amazed that she was able to coordinate sucking, swallowing, and breathing and was discharged without a feeding tube.

At four months old, we had a follow-up MRI in order to evaluate the extent of the damage. Effie suffered a profound amount of damage to her brain. In fact, the large majority of her brain was injured so severely that it is now dead tissue. Since that time, Effie has been diagnosed with cerebral palsy, epilepsy, microcephaly, cortical vision impairment and developmental delay. Her developmental potential is unknown, but likely restricted – it is completely dependent of the potential  of  brain plasticity.

Effie has been receiving early intervention services (physical, occupational,and developmental therapies) since six weeks of age. When I had to go back to work in the summer, Effie initially went to the daycare we had originally planned to use. While they were very loving and took good care of her, they were also fairly uncomfortable with her diagnoses. We were so blessed that Siskin Children’s Institute had made the decision to extend their philosophy of prioritizing inclusive programming in all age groups, and she was accepted into one of the infant classrooms in the fall.  

Although she has few medical needs during the school day, it is comforting for us to have a nurse in the building. Additionally, we could not have asked for more amazing teachers. Effie's level of care remains much like that of a three or four month old. And they have not only embraced her care, but demonstrated clear love and affection for her daily. In addition to taking care of her basic needs, they are also committed to doing what they can each day to encourage her development as well as provide her with normative experiences.

The best thing about Siskin is the availability of therapy services – not only does Effie get her interventions during the school day, but the therapists work diligently to provide support and education to classroom teachers about ways they can help Effie throughout the day. The love and care that Effie's caregivers have given to her is most evident in the eyes and actions of the typically-developing children in the room. When Effie comes to school each day and the other kids in her class (who are only starting to talk) are not only saying her name, but also go out of their way to give her gentle hugs or bring her toys, or stroke her hair or play near her COMPLETELY unprompted by the adults in the room, that is the true testament to the care that she receives at Siskin.

We don’t know what the future holds for Effie – she may or may not ever walk, feed herself, hold a pencil, say a word, or even smile. What we do know, though, is that the interactions she has with each and every individual, each and every moment that she is at Siskin, enhances her life. The opportunity for her to have normative experiences with her peers while also receiving interventions and accommodations appropriate for her, to feel love and acceptance from everyone around her, to have peers who at one year of age already accept her as part of their circle – all of these things combine to increase Effie's chances of developmental progress and her quality of life. As parents, there is nothing more that we could ask for. There are no words that feel adequate enough to describe the amount of gratitude that we have for the people who are Siskin Children’s Institute – the place/the people who care for, cheer for, and cherish our Effie as much as we do.

-- April, Effie's mother