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Matthew's Story   — Cindy Raymond, ME, USA

The OBGYN sent me to a pediatrician who informed me of what I would have to face being Beta Strep Positive, and that I would be given antibiotics before delivering my son in 1994. I felt reassured that the baby would be fine. HOWEVER, during my delivery, my i.v. infiltrated, so the antibiotics were not effective against the Beta Strep as my child came through the birth canal. As a result of this, my 9 lb, 4 oz baby boy was in great distress with his lungs collapsing. The hospital did not have a ventilator, so the pediatrician used a handheld breathing apparatus to keep my baby alive until the team from Portland, Maine arrived to take the baby to their NICU at Maine Medical Center. A day later, they transported my baby (who had a 20 % chance of survival) to Boston Children's Hospital where an ECMO machine was available and had a technician 24/7 running the machine and making sure the baby wasn't having brain bleeds. The machine saved his life; however, the longer a child is on the ECMO, there is more serious internal damage that can occur. Luckily, little Matthew was only on the ECMO for six days. Then he returned to Maine Medical Center where he recovered and was released after two months. He was very sick during his first two years of life. He also had open heart surgery at a month old. From age two until age five, he had asthma and required nebulizer treatments to open his air way. He had strabismus, and at age four, had corrective eye surgery. He did not talk until he was 2 1/2 years old, had poor fine motor skills and delayed gross motor skills, and was easily alarmed by loud noises. At a later age, diagnosed with Asperger's Syndrome (a form of high functioning autism.) At age 10, Matt had another open heart surgery which did not fix the problem. Therefore, he is dependent on medication to keep his heart functioning properly and will most likely need a valve replacement after puberty. Today, Matt is about to turn 11 years old. He is extremely smart, very articulate, gifted in some areas of interests, delayed in gross motor skills like can't ride a bike or swim well, is a math and science whiz, is computer literate, loves the Harry Potter series, and still hates loud noises/crowds/changes in routine, and struggles socially, but has come a long way! The most important attribute is that he is a gift from God and will do great things. I see in Matthew something extra special, a spirituality about him that other children his age don't show. He is a survivor and our story is important to share. I am saddened and appalled to hear that babies continue to die from GBS!

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