Olivia was born after a routine uneventful pregnancy via planned c-section at TCMC-DHK. She was born with a full head of golden hair and a powerful cry. However it was soon discovered in the delivery room that she had "markers" for Down syndrome (DS). She was floppy (low tone), her eyes were almond shape, there was a gap between her first and second toe and her fingers were curved and crooked.
Olivia was transported to DHMC-ICN (intensive care nursery) for supplemental oxygen and more tests. She was diagnosed at three days old as having congenital heart disease. She had three holes in her heart, the largest being 8 mm. She finally arrived home when she was six days old, on her grandmother's birthday.
Olivia began experiencing congestive heart failure at six weeks old. She was placed on a NG feeding tube and required a four day stay at DHMC. She was placed on heart medications and referred to Children's Hospital in Boston. She was ten weeks old when she had open heart surgery to repair her three holes. She was released from Boston five days later.
Olivia has had multiple problems with her hearing partly due to having DS and partly just having bad luck. She has had three surgeries on her ears which restored hearing in both ears. She also required a molding helmet to wear for eight weeks because she had plagiocephaly due to her neck musculature being weak from her low tone.
Olivia is a very determined, independent child. She is more alike than different. She makes her family proud everyday.
Amy Rounds choose to be on this Committee to help other parents who are trying to navigate the medical system and to welcome new people into the disability community so they feel that they are not alone.
Annie is the proud mother of three boys (16 years old, 15 years old and 12 years old). Although Annie has an Associate's Degree in Early Childhood Education, a Bachelor's Degree in Elementary Education, and recently completed the Autism Spectrum Disorders Certificate Program at Antioch University, she views her personal experience of the Autism Spectrum, her most valuable education.
When Annie's oldest son was diagnosed on the Autism Spectrum, along with various learning disabilities, she felt confused, uneducated, and didn't know where to turn for assistance. Annie is proud to say that her son that was once unable to verbally communicate, and preferred to live in "a world of his own", is thriving at Keene High School, and is currently establishing a vocational plan that will assist in a successful transition into adulthood. Annie takes pride in the team of individuals that have assisted her son over the years, as well as the support system she has been blessed with, and hopes to assist other families in the same manner. While living a life consisting of building Individual Education Plans, teaching social pragmatics, enhancing a sense of self esteem, and creating a path for her son to follow in life, Annie found the desire to establish a path that other parents of children with disabilities could follow. In becoming a Parent Advocate, and being a member of the Family Advisory Council, Annie hopes that she can assist other families by sharing her knowledge, experience, resources, and positive outlook, with the ultimate goal of giving each and every individual the opportunity to live life to their fullest capabilities.
Deb ChamberlainI am blessed to be the mother of a beautiful, healthy girl and have been a pediatric nurse since 1997 when I joined Dartmouth Hitchcock Keene Pediatrics and Adolescent Medicine. Although I did not always know that I wanted to be a nurse I always knew that I wanted to work with kids. When I first graduated nursing school in 1996, I spent a year working at Cedar Crest, a home and school for children with special needs. This was a fantastic experience for me and I believe paved the path that I ultimately took in getting to where I am now.
I have held many positions within Pediatrics and Adolescent Medicine including staff nurse, telephone triage nurse, clinical leader, and care coordinator; the most rewarding of these being Care Coordinator. I am a firm believer that the family is the expert and tell families this often. If they don't feel like the expert I let them know that they soon will and they will be teaching their care team many things.
I truly enjoy working with families that have children with special needs and have had the privilege of making many friends through these connections.
Gail DubriskeI live in Keene, I have 4 children ages, 22, 27, 29, & 30 and 4 grandchildren ages, 5, 3, 18 mos & 10 mos, two see Dr Rubin. I have worked as a receptionist in Pediatrics for 7 years and have loved every minute. I joined the Family Advisory Council last year, I am interested in hearing from the parents about what we can do to improve a family's visit in Pediatrics. I was on the patient satisfaction committee meeting for 2 yrs, we broke down all the patient satisfaction surveys and looked at each department question for question. I think being part of the Advisory Council and hearing the voice of our patients will help me make more positive changes.
I am a mother of three and have been a Pediatrician since 1995. I have wanted to be a Pediatrician since I was a kid. I have my own special health care need being born without one hand. I worked with many devoted doctors and occupational therapists as a child and it shaped who I am and what I wanted to become. Kids are incredibly perceptive and resilient.
Having my own kids has been an incredible experience. We face some behavioral and emotional challenges which have opened up my eyes to helping families connect with resources that will support them, connect with their schools and connect with their kids looking beyond the behavior to understand what is driving it and how to improve the parent child relationship.
Working with kids and their families is an incredible experience through both the joyful and sad times. I feel privileged to share that intimate experience with those I partner with in the care of their children.
I live in Keene NH with my husband and our two teenage children. Our son Adam was diagnosed with Type 1 diabetes (also known as Juvenile Onset Diabetes) on January 3, 2003 at the age of eight. At the time of diagnosis we did not know much about Type 1 diabetes. We sure do now! We have made it our family mission to educate the public about "diabetes". There are two very different types of diabetes. Type 1 diabetes (also known as juvenile onset diabetes) and Type 2 diabetes (also known as adult onset diabetes) which is becoming more and more prevalent. Because of this, there is a lot of misinformation and lack of understanding around "diabetes"; particularly about type 1 diabetes which is the more invasive and difficult condition to manage.
As a family we have also held some local fundraisers to raise money for juvenile Diabetes Research Foundation which goes toward finding a cure for diabetes. Type 1 diabetes is usually diagnosed in children and young adults. It is an autoimmune disorder. In type 1 diabetes, the body does not produce insulin. Insulin is a hormone that is needed to convert sugar (glucose), starches and other food into energy needed for daily life. Insulin becomes your life support. It can not be prevented and is not brought on by diet or lack of physical activity. People living with type 1 diabetes have to monitor their blood sugar constantly and take insulin for every carbohydrate that they eat. It is a condition that requires constant monitoring. Things like a cold or the flu require monitoring the blood sugar every two hours for safety. Such things as the weather, exercise, puberty, and a women's menstrual cycle all become challenges to keep blood sugars in control. You can never take a vacation from type 1 diabetes.
Type 2 diabetes usually happens in adulthood. Type 2 diabetes is the most common form of diabetes. In type 2 diabetes, either the body does not produce enough insulin or the cells ignore the insulin. Insulin is necessary for the body to be able to use glucose for energy. With a healthy diet and exercise many people with type 2 diabetes and or pre diabetes can control their blood sugar and in some cases prevent getting type 2 diabetes. Some people are genetically predisposed to type 2 diabetes. Most of the information that is communicated is about type 2 diabetes but often does not specify this.
At the time Adam was diagnosed we were introduced to Partners in Health (PIH) which is a program that supports families who have a child (birth to 21) with a chronic health condition which impacts their daily life activities. We found the program to be helpful in many ways; so much so that I am now the Family Support Coordinator for PIH in the Monadnock Region. It is a state wide program that supports families' needs around living with a chronic health condition. Children and young adults living with a chronic health condition face many additional challenges that other children do not face such as lots of doctors appointments, often invasive medical procedures, ongoing monitoring of their condition and things of this nature. Having the emotional support that the child or young adult and the family needs is a crucial part of growing into a healthy, happy adult and maintaining a strong family unit.
Spencer was born on May 3, 2003 after an uneventful pregnancy. Within moments of his birth we knew something was wrong because he couldn't breathe. His original diagnosis was critical aortic stenosis, and he spent three months at Boston Children's, during which time he had two open heart surgeries. We were home for about six weeks, and then we were back at Children's for another surgery We spent three more weeks at Children's, and then we went home with a plan to go back to Children's around age 3 for another open heart surgery.
In addition to all the heart issues, Spencer struggled to eat and had a G-tube placement at about 8 weeks old. Once his heart was stable, I was on a mission to get him to eat by mouth. I worked closely with a GI doctor, speech therapists, and occupational therapists to figure out how to teach Spencer to eat, and at about 10 months he started eating.
Spencer had two more planned open heart surgeries, the last of which at age 4 returned him to a two-ventricled system. Seven months after that surgery he suddenly went into heart failure, and he was listed for heart transplant. We waited for about two weeks for a new heart, and then the doctors found that he was inexplicably better. They think now that he had a virus that attacked his heart. As of now, he should not need any other surgeries.
Spencer is now on daily heart meds and is seen by his cardiologist about every 4 months. He has caught up to his peers in all areas except for fine motor skills, for which he receives occupational therapy through his school.
I joined the Parent Advisory Committee in order to give back a tiny bit to the medical community that gave us back our son.
Lisa currently serves on the Board of Directors at Rise...for baby and family, a Monadnock United Way agency. Rise offers early support services for infants and toddlers up to 3 years of age with delays in the developmental areas of language, cognitive, fine motor, gross motor, self help, or social emotional development. These early intervention services are available to families at no charge through the agency's support from Monadnock Developmental Services, Monadnock United Way, Cheshire County, private insurance, and the support of the community. Families do not have to travel to access services and therapies; regular home visits are made so that the whole family can participate. The qualified team at Rise includes speech therapists, physical therapists, occupational therapists.
Okay so that with that big list of diagnoses you would think that we have our hands full with Abby right? Well we are so lucky and blessed to have Abby in our lives. As I write this it is Summer of 2009 and Abby is going to be entering first grade and is 7 years old. We have had such a wonderful year of "growth" with Abby, the light came on and something clicked inside of her, she is more and more verbal and knows her ABC's and is even starting to read sight words.
Our journey began very early in Abby's life. She was diagnosed with having seizures at 11 days old. There were in a day and many were over 30 minutes long. We had our first long stint in the hospital and had many, many tests. After 10 days she was diagnosed with Intractable Epilepsy Seizure disorder as they couldn't find a reason and Abby was put on her first meds.
During her first 2 years of life she was in the hospital 75 days, had 8 pneumonias (2 being RSV) and protected herself by not having her bottles. At the age of 2 she had a Nissen Fundoplication to prevent the reflux and aspiration and a G-tube was placed. She was NPO for 3 years and just in the past year has been learning how to eat. Because of her delayed Gastric emptying she was not able to accept bolus feeds so was put on a pump for 24 hour feeds. At the age of 4 ½ she was given a backpack for her feeding tube which saved and changed our lives. Abby was able to be a kid and move around and not be tied to her IV pole. Right after she turned 2 she was also diagnosed with SCADD, a mitochondrial disorder where her body can't process fat into energy. She went on a NON to low FAT diet for her feeds and was put on more meds. Here seizures were still increasing and at one point she was on 6 seizure meds.
A lot has changed in her 7 years. Although she is globally delayed we are so happy to see the small improvements. She currently is on 13 medicines a day and is on her feeding tube from 5pm to 6:30am so is able to be a "regular kid" during the day. It has been 2 ½ years since she had a seizure (that we know of) and she is talking so much more each and every day. In addition to her love of school and her eagerness to learn she also loves her doctors and care team including going to the different hospitals and therapy centers that she has appointments at.
I joined the Family Advisory Council as I have been so grateful to be a part of the "Medical Home" at CMC-DHMC-Keene. Deb Chamberlain entered our life when Abby was 8 months old and started being our care coordinator. Without her help and the help of all of Abby's doctors and therapists I am not sure where we would be today. I wanted others to be able to have positive experiences when you feel like your child's life is falling apart. I also wanted others to know that there are people out there that want to help you through this process even if it is just feeling like you are part of a community of children that have chronic disorders.
Sandy is the proud mom of four children, ranging in age from four to 15. Her ten year old son, Anthony was born 2 months premature, and her youngest daughter, Anna who is four, was born 3 months premature, both due to placental abruptions. Sandy has been a Volunteer Breastfeeding Peer Mentor at the Intensive Care Nursery at Dartmouth in Lebanon for the past three years. She finds it to be an honor to go back into the unit, and support other families going through the roller coaster ride of having a premature baby. As with any diagnosis, you never know what lies ahead. It is nice to offer input from someone who has stood in these families shoes.
I'm a busy Mom of two teenage daughters and an eight year old son. All three are very active, normally developing children that were each diagnosed with Asthma by their six month birthdays. Every seasonal cold, virus, and sport related activity would trigger an asthma attack of varying degrees. Throughout the years this has led to many ER visits, breathing treatments, nebulizers at home, missed school and social activities, sport restrictions and several combinations of daily meds, not to mention the stress and worry! Our primary care pediatrician, Dr. Rubin, has been instrumental in managing their care and teaching us and our children how to responsibly manage their illness. She filtered through patterns of attacks and triggers and has been dedicated to the daily management of their asthma. She has always kept their personal need to participate fully in school, music and athletics as goal in their care plan. Because of the personalized action care plans developed by the asthma team at DMC, our daughters are accomplished athletes and scholars and our son plays wind instruments and participates fully in all activities of a third grader. I joined this committee in hopes of reaching out and supporting parents of asthmatic children and help them find the many resources available in our community.
Sylvia is the proud parent of three children. The diagnosis of her oldest and youngest children with forms of childhood cancer switched her career path, leading her to found the Childhood Cancer Lifeline of NH with a group of other parents in 1995. The experience of working with families to support families led her to her position with NH Family Voices in 1999. As an employee of NH Family Voices, Sylvia has been able to blend her background in education and her experience in healthcare with her passion to support families and to shape systems.