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When did you first find out about your child’s diagnosis? How did you decide what to do next? My husband and I were living in New Mexico when we were informed during our first ultrasound that something was not right. From that point on there were questions, medical assessments, and a fetal MRI conducted to confirm one of the suspicions – our baby had a left CDH. We accidentally were informed that our child was a baby boy. From that point on, we celebrated our son, Brody. We did not want to take any moment for granted. We consulted with numerous doctors. It was communicated to us that New Mexico would not be able to help us when Brody would be born. My husband and I are both from South Dakota; therefore, it was logical for us to see if the doctors and caregivers in Sioux Falls would be capable of caring for our child. After investigating, we moved cross country and nine months pregnant to Sioux Falls to provide the best opportunity for our son. What was your family’s course of action? Our course of action was to seek out supports (medically, academically, therapeutically) that Brody needs to thrive. Unfortunately with medical issues where multiple areas of the medical profession are needed, there was no intermediary available to talk to all doctors at the same time and to look at the holistic approach for how to treat our son. That was when we learned to ask more questions, even if they seemed simple or common sense questions to visit
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ask. Sometimes medications or courses of action didn’t match up, so we just needed to use our gut and mother’s intuition to decide the best course of action.
Are there any resources you recommend? We recommend www.savethecherubs.org, Boston Children’s Hospital, and Sanford Pediatric Hospital. I am the representative for CHERUBS in South Dakota and North Dakota. As parents, we are constantly striving to do the best that we can for our children, and it is daunting the increased information that one needs to find with a child with extra needs. I feel strongly that we need to support each other as parents and educate the general public at the same time. However, that is a lot to ask when you are in the trenches. Therefore, this is one of the organizations that I am a part of to support parents, receive support, and raise awareness for CDH and its research and our amazing children. What advice do you have for other parents? Ask questions. Become educated. You are your child’s best advocate. What is right for your child makes it right. Seek the answers. Trust your Mommy gut.