2013-05-20 13:45:01 by Ann Britz, as posted on the inside.akronchildrens.org blog.
Our story began on May 5, 2007. When I was 25 weeks pregnant, I had a fetal MRI and my husband and I were told that our unborn daughter had a condition called hydranencephaly.
Somewhere between the 20th and 25th week, the two main arteries to Carina’s brain failed to carry adequate blood supply to the cortex, inhibiting this portion of the brain from developing. They told us that most babies with this condition typically only live a few days to a month after birth. We were advised by a care team that their primary goal would be to keep our baby comfortable, and they would not implement aggressive medical treatment. At that point, we turned to hospice services for guidance and supportive counseling. Carina was due to be born on July 9, and the doctor advised taking her to full term.
The next few months were worrisome, stressful, and challenging to say the least. My husband and I relied on the support of our family and friends to continue with the pregnancy and prepare for her arrival. Because she was so active in utero, we were told our safest option was to deliver Carina by c-section.
The c-section was performed on June 25, 2007, and Carina Ruth Ann arrived at 8:23 a.m. with a full head of black hair and a strong set of lungs. She came in at 6lbs, 18 inches long, and was absolutely beautiful! Carina was monitored over the next 5 days by loving nurses, friends and family.
On June 30, we received the great news that Carina was able to come home. She received a grand welcome by our dog Shultz - and a 10 ft. Stork in the front yard. Though initially unprepared, our friends and family gathered all the necessary items to ensure Carina was safe and comfortable.
Anyone who was fortunate enough to have met Carina grew to love her squeaky noises, pudgy cheeks, and precious cooing when she sucked down her bottles. On a regular basis, Carina participated in physical therapy with Miss Regina, received monthly visits from Nurse Anna, and became part of the Help Me Grow program through Medina County.
Due to her poor prognosis we also turned to the team of physicians, nurses, and social workers from Akron Children’s Haslinger Family Pediatric Palliative Care Center, along with local hospice services. The Akron Children’s palliative care team provided Carina with comfort medications, oxygen, and a team on-call 24 hours a day to address our questions and calm any fears. With the help of the palliative care team, we made sure Carina had a life filled with hope, peace and comfort. Carina took her last breath at 21 months on March 31, 2009, in the arms of her daddy.
Because of the excellent care Carina received at Akron Children’s Hospital, our family soon decided we wanted to give something back. We decided to start the Courage for Carina Foundation in her memory, a non-profit organization whose mission is to support chronically ill children through the Haslinger Family Pediatric Palliative Care Center at Akron Children’s Hospital.
A wine tasting event to raise funds for this cause will be held on May 20, visit courageforcarina.org for more information or to purchase tickets.
(8 a.m.-4:30 p.m.)
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