I’ll never forget the day I was sitting at our kitchen table talking on the phone to a friend when my wife came running into the room, she was 15 weeks pregnant, returning home after having an ultrasound. She was down cast & said these two words which were going to change our lives’ forever, “Trisomy 21” I had never in my life heard the phrase “Trisomy 21.” She went on to explain to me our child had Down syndrome. I was so confused & in disbelief! And there we sat, alone, scared, worried, confused in shock.
When our daughter was born in January 2013 all I can remember of those moments is her face. In my arms, opening her eyes over and over as she locked eyes with mine and stared, she bored a hole into my soul saying love me. Love me, she seemed to be telling me. I’m not what you expected but, please, love me. That was the most defining moment of our lives.
Six weeks after birth Briana was enrolled in the “Early Intervention” services given by a team of experts to help her develop to maximum ability. Briana exhibited low muscle tone and an array of other factors which have contributed to delayed speech and difficulty with articulation.
Besides being Down Syndrome, we were told Briana was okay. As it turned out, those accounts were inaccurate. Stroke signs and symptoms were there from the start. At four months we noticed she was unable to use her right side, both arm, and leg had no motions. After three months of therapy, there was no improvement in her situation. A visit to pediatric neurologist was followed with an MRI, confirmed that Briana had suffered a perinatal stroke.
Besides the damage on her brain Briana exhibited important components of tissue damage in stroke most notably in the deprivation of oxygen and glucose, excitotoxicity (excess release of glutamate from affected cells) and production of harmful free radicals. The exposures include: Oxygen-glucose deprivation, Glutamate-induced excitotoxic insult, and Hydrogen peroxide-induced free radical insult. The obvious sign of oxygen deprivation led to lack of weight gain. Between the sixth month and the eleventh, Briana did not gain a single pound a time when babies’ weights double. A human milk fortifier as a supplement was introduced to help her gain some weight.
In addition to the stroke, Briana had an obstructive sleep apnea due to extra tissue and skeletal changes that lead to the obstruction of her airway. When she turned one year old surgery was performed to remove the extra tissue freeing her airway passage.
Caring for Briana is a full time job, a decision was made where one us as parents’ had to stay home to care for her and this also meant a loss of income to cover basic needs including medical expenses. We are indeed glad to be part of the Shannon Daley Memorial Fund. Any help will be very much appreciated.