October is National Down Syndrome Awareness month. The Pulse was privileged to profile Jacob and his courageous family in the October 24, 2012 edition in an effort to increase awareness that Jacob and 400,000 other people living in America with Down syndrome are “more alike than different.”
BY LEANN DILBECK –
God’s blessings and inspirations come in many different sizes and packages but for one Mena family, their’s was born August 17, 2011, and his name is Jacob Ryan Turner.
After a seemingly perfect pregnancy, Jacob was born to Eric and Emily Turner. Due to Emily’s age, doctors had ordered two Level II ultrasounds to look for soft-markers for Down syndrome, each had returned normal. “But as soon as I saw him, I knew he had Down syndrome but I didn’t say anything,” said Emily. Eric did too because Jacob had the upward slanted almond shaped eyes that is the most visible characteristic of the syndrome.
Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. Other common physical traits of a child with Down syndrome are low muscle tone, small stature, and a single deep crease across the center of the palm, or a downward curve to the pinky finger.
Following Jacob’s first initial medical evaluation, doctors confirmed that Jacob was, in fact, one of 691 babies born in the United States with the chromosomal defect but what became more urgent was a heart murmur that was detected.
An ECHO determined that Jacob had suffered from a complete atrioventricular canal defect, a serious and complex cardiac anomaly that is frequently associated with other congenital cardiac defects. Jacob was immediately air-lifted to world renowned Arkansas Children’s Hospital [ACH]. The more sophisticated tests wouldn’t arrive for months that Jacob conclusively had Down syndrome but for Eric and Emily, their reality came much sooner.
Emily admitted to having a great deal of fear and anxiety and contributed much of her tears from a lack of knowledge or familiarity with the syndrome. “It was like having the rug pulled out from under you,” Emily said but they were both still so grateful to have him. But it has been through conquering those emotions that Emily and Eric both are choosing to be out-spoken advocates.
Jacob remained at ACH NICU for seventeen days for his cardiac team to do a thorough study of his condition. They also needed Jacob to be feeding well before he could be released. The team prepared the family that Jacob would require surgery to repair his heart before he was six months old and could potentially face heart failure. Gratefully, Jacob never had any of the anticipated complications and would face his first open-heart surgery at ACH on November 29, at just 3 1/2 months old. He was discharged just nine short days later but is continually monitored for pulmonary hypertension, which is abnormally high blood pressure in the arteries of the lungs. It makes the right side of the heart work harder than normal.
Emily said that it was a combination of many things that enabled her to embrace her family’s new life, one of which was talking with other mothers. Emily, no stranger to the medical profession is a RN at the MRHS Emergency Department. She said she consumed herself with educating herself more and reaching out to others in her same position that she could ask questions but ultimately she said, “It was learning to take one day at a time. Not to continually be worrying about ten years from now…or even next week but just one day at a time.”
Emily said that she felt blessed to have Jacob in an era of such increased knowledge of the syndrome. “The life expectancy is so much greater today than what it used to be.” And dramatically in just recent decades thanks to the medical and technological advancements, individuals with Down syndrome were expected to only live to age 25 in 1983 to age 60 today.
Emily added that she’s learned that inclusion and early intervention can help main stream them. She spoke of the need for occupational, speech, developmental, and physical therapies of which, they drive to Glenwood for right now.
Jacob enjoys his older sister, Emma, and Emily said that she has been one of the most beautiful lessons learned through the process, “She doesn’t see any differences,” said Emily. Emma truly embodies what they hope their voice can be used for in their advocacy work, “more alike than different.”
As reported in last week’s issue, the family participated in their first “Buddy Walk” in northwest Arkansas earlier this year. They hope to host their own in Mena along with a 5K Run/Walk in Mena in the near future. “It just helps the awareness for these kids with Down syndrome that they are just like anyone else and just want to be included.”
All individuals with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses. Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.
Reflecting to this same time a year ago, Emily said “Jacob has taught us that you just have to live each day to the fullest. He’s so strong…he’s been through so much. He’s brought our family together, he’s brought us friends that we would’ve never met. We just thank God for him daily.”
For more information on Down syndrome, the Turner family encourages using www.ndss.org as a resource.