Brett from European Union

Brett was born in April 2015 via C-section from a pregnancy complicated by maternal toxemia, polyhydramnios, and decreased fetal movement. He had an overall difficult neonatal course which included ventilation and oxygen therapy for 20 days, absent suck and swallow reflexes, severe hypotonia, and quadriparesis. Brett has been diagnosed with a congenital malformation syndrome, predominantly affecting the facial area, persistent foramen ovale, persistent pulmonary hypertension, bilateral clubfeet, and significant delays in development. He has frequent respiratory infections. Update August 2021: Brett is an observant child who shows a keen interest in people. He initiates interactions, often imitates others’ behavior, and can name his caretakers, therapists, doctors, and some of the children from his group. He walks while holding a hand or a fixed support, climbs furniture independently, and opens and closes doors. Brett now feeds himself with a spoon, albeit slowly, and eats with a good appetite. He seems to take pride in these accomplishments and shows an increased willingness to seek new challenges. Brett follows verbal instructions related to his everyday life without the need for augmentation with gestures. He participates in basic conversations, answering questions with one or two words, although his speech is often incomprehensible to people who are not familiar with him. Brett shows limited interest in fine motor activities, playing briefly with modeling clay, and making light marks on paper with colored pencils. He does not play purposefully with toys and struggles with focus and attention span in group activities, preferring instead individual interactions with adults. He continues to love music, swaying his body to the rhythm. Brett needs a forever family who is prepared for his evolving diagnoses, and who can offer him acceptance, encouragement, and love. 2019: It is noted in Brett’s recent medical documents that he still has an unspecified diagnosis with an observed metabolic disease – multiple sulfatase deficiency. Testing for organic acid and amino acid disorders, peroxisomal disorders, and spinal muscular atrophy was reportedly negative. Results of microdeletion analysis are currently pending. Brett continues to make progress in his gross motor skills and can now sit independently, crawl, and stand and walk when holding a fixed support. Brett reacts to his name, smiles at familiar people, and responds to children’s songs with appropriate emotions, body movements, and hand gestures. He shows a basic understanding of speech and has recently begun to vocalize simple words and the names of several caretakers and children in his group. Brett is a picky eater and swallows pureed food slowly and with some difficulty. He is fully dependent on his caregivers. 2017: Brett’s caregivers share that he has made slow but continuous progress since his placement at the orphanage, including the development of sucking and swallowing reflexes so that tube feeds are no longer necessary, an improvement of his muscle tone, and an increase in spontaneous movement of his lower limbs. Brett rolls from front to back and when lying on his stomach or placed in a seated position, he shows good head control. His trunk strength has also improved, and he is able to sit with the support of just one hand, as well as hold himself upright in a baby walker. At present, Brett receives physical therapy 5 times a week and works with a psychologist 3 times per week. Brett reaches for toys that are attached to his bed and grasps objects that are handed to him. He enjoys musical toys and rattles and loves to press the buttons on a musical book with flashing lights. Brett shows an interest in his surroundings, follows with his eyes, and turns his head in response to sound. When spoken to by an adult he shows good eye contact. He smiles and laughs when tickled, and cries when feeling unwell. Weight at birth: 3.37 kg Height at birth: 50 cm Weight May 2021: 114 kg Height May 2021: Not given