Brynn was born on the morning of December 16, 1999. Everything went smoothly and Ken and I were amazed with our baby girl. That evening, Brynn was sent back to the nursery where they discovered she was turning blue. They immediately took her to intensive care and decided that she needed to be transported to another hospital specializing in children's care. Terrified, I called Ken and told him the news. The last I saw of Brynn for two days was when they brought her up to my room in an oxygen transport tank so I could say good-bye. Ken went to the other hospital and was told the news that she had a heart condition called Tricuspid Atresia. That means, she was born without a Tricuspid Valve (this valve regulates blood flow through the right two chambers of the heart.) Just 26 hours after her birth she went through the first of many procedures with Ken by her side. Needless to say, we were grief stricken. She stayed in the hospital for four more days and then we were able to take her home. The first part of her life we were at the doctors quite often. She has been through a series of heart catheterizations to monitor the pressures in her heart and lungs, sedated sonograms of her heart, x-rays, blood tests, and general checkups every two weeks. March 3, 2000, the doctors informed us they would need to perform open heart surgery to reconfigure the arteries. Originally they had said the ideal age to do this surgery would be when Brynn is six months of age, but Brynn's condition couldn't wait and they scheduled it for April 14, 2000. Two days before Brynn's scheduled surgery, the doctors office called and asked if we could reschedule her surgery a day earlier. Just one day earlier seemed like a lifetime. It was one less day we might have with our daughter. It was also my birthday. Reluctantly, we agreed and her surgery was set for April 13, 2000. The day before the surgery was difficult. Even though we were optimistic, we knew there was a chance she would not survive or would have organ/brain damage. We couldn't help thinking this might be the last time we would ever see her smile. Thursday morning, April 13, 2000, we brought Brynn to the hospital. Handing our baby over for this kind of operation was the hardest thing we've ever had to do. The procedure took six and a half hours and then we were finally able to see her. There she was, this tiny baby on life support, connected to IV's, machines, and oxygen. She didn't even look like Brynn. The first twelve hours after surgery were the most critical as far as complications go. She did excellent. Two days later and we had great news - the surgery was successful and she was now out of danger. Brynn stayed in the hospital for six more days. Brynn continues to do well until her checkup on October 1, 2001; she had failed to gain any weight in the past six months and her lips and fingers were turning bluer (which was a result of her oxygen being very low). Ken and I noticed she was getting more out of breath with activities but thought we would be doing the Fontan open heart surgery closer to the age of 4. Well, here she was, not even 2 years old. Her surgery date was set for December 17, 2001, just one day after her second birthday. My parents arrived from Texas to celebrate her birthday on December 16, 2001. After she ate ice cream and cake, we put her to sleep knowing things would be much different tomorrow. Later that evening, Father Bill and Ken's brother Kevin, flew in from Southern California. Father Bill performed mass for Brynn in our home and we asked God to heart our many prayers. With Brynn's first surgery at 4 months old, we were consumed with thoughts of her not making it. This time, we were much more positive. It was just inconceivable to imagine living without her. Our biggest concern was how much pain she would be in and how scary this would be for her. 5:30 am on December 17, 2001 and we were off to the hospital. Brynn was ready for an adventure and was bright and bubbly. She knew better when she saw the hospital. The idea of handing our baby over at 4 months of age for her first surgery was hard, but now it seemed impossible. Now, being 2 years old, Brynn was very aware and did not like hospitals or doctors. Luckily, they sedated her so that when it was time, it wouldn't be so traumatic. We also had the option to carry her into the operating room, but luckily she rode off in a wagon and was in la la land. We watched our daughter turn into the operating room and knew her life was in someone else's hands. Waiting is always difficult, but we were fortunate to be surrounded by many. Believe it or not, time passed quickly. Throughout the surgery we were given updates. When it was finally over and we were told the surgery was successful, we all celebrated with much cheering, high five's, hugs, and tears of joy and relief. With the surgery behind us, the danger was not over. Our next hurdle was getting Brynn off the ventilator and seeing if her body could breathe on its own. We were hopeful she would be extubated (taken off the ventilator) on Day 1, but she was not strong enough. Her body would not breathe on its over and also required assistance from a pacemaker. All of this was very frightening for her as well as uncomfortable. On Day 2 we were able to remove her ventilator and she was much happier. Her first word was "Hug" and we all gladly reciprocated. In face, she even "danced" in her bed. We all thought we had made it through the worst, but on Day 3 they had to put a drainage tube in her right chest cavity. Her lungs had collapsed and this would help drain the excess fluids. After that, she was in much more pain. We wanted Brynn to have constant companionship during her hospital stay and there was always someone by her side. Ken, myself, and my father all took shifts (my mother was at home with our daughter, Alexa, 7 months old). Day 4 and 5 were much better and then we were moved out of the Intensive Care and onto the regular floor. There she remained for 3 more days. We were all amazed at how well she handled the hospital and everything done to her. She was so brave and trusting. On the morning of Christmas Eve, we got the great news that Brynn was being discharged later that day. As with the first surgery, Brynn was on oxygen 24 hours a day which proved somewhat challenging with an active 2 year old! Three months after her last surgery, we planned a vacation to celebrate Brynn's health and bravery. We flew to Palm Springs, California and enjoyed a week of swimming, family time, etc. As with all vacations, we had a great time, but were excited to be heading home. As we did on our flight to Palm Springs, we boarded the plane and notified the flight attendant of our daughter's condition in case of an unlikely emergency. Immediately, the flight attendant said we could not fly with a heart defect. I was shocked and stated that of course she could fly. Brynn was approved to fly by her cardiologist and the airline was notified in advance. The flight attendant maintained her position and explained to me that by knowing about the defect, that it was a liability for the airline. I tried to everything to reassure her that my daughter was no greater risk than many other passengers on the plane and that she should not refuse to fly her. At that point, she threatened to call law enforcement and have us physically removed from the plane. We were left with no alternative, but to leave the plane. I was dumbfounded that this could have happened. Who could have ever imagined we would be asked to leave the plane with no other way home, simply because my daughter had a congenital heart defect. There we were, stranded. We examined every travel option and had to explain our daughter medical history and our current dilemma to perfect strangers. Our only saving grace was that Brynn was too young to understand why this was happening. After the humiliation of being asked to leave the plane, our only option was to rent a car. This, during spring break, when every car rental agency was sold out. Fortunately, after much begging, we received a car. During our 12 hour drive home, with Brynn and our 9 month old daughter, Alexa, we reflected on the reality that the airline viewed and treated our daughter and our family differently. This discrimination reminded us of every doubt filled and frightening moment that is attendant with having a child with a serious illness. We did not want this situation to ever happen again and vowed that the airline and its employees would not get away with this. The law was clear that their conduct was prohibited. Our goal was to resolve this situation without a lawsuit. We wanted to obtain reimbursement for our expenses and to determine what actions we needed to take in order to prevent similar discriminatory and illegal acts on other families and individuals with disabilities. We found ourselves in a situation where we did not want to "benefit" from this discrimination. The airline agreed to settle and our solution was to donate money to two important organizations. The first being, the Zachary Brooks CHD Endowment. The airline made a donation in our daughter's name for $2,500.00 to this organization started by a women who lost her son to CHD. The second organization is called CHIN, which stands for Congenital Heart Information Network. This is an international organization that provided reliable information, support services and resources to families of children with congenital and acquired heart disease, adults with CHD's, and professionals who work with them. We personally have met hundreds of families through this network. Again, the airline donated $500.00 to CHIN, in our daughter's name. Looking back, we are reassured to know that positive has come out of a negative situation. We have been able to educate the airline and their employees about congenital heart defects and discrimination, demand additional training and have helped two very important organizations in their quest to educate and research congenital heart defects. Today, Brynn is doing extremely well. She is a smart, beautiful little girl whose future is bright! Sincerely, Laura and Ken Kelter |
Brynn Anne Kelter has touched many hearts in her time here on earth, now, she is helping to save hearts. |
Little Hearts Helping Little Hearts |
Brynn was born on the morning of December 16, 1999. Everything went smoothly and Ken and I were amazed with our baby girl. That evening, Brynn was sent back to the nursery where they discovered she was turning blue. They immediately took her to intensive care and decided that she needed to be transported to another hospital specializing in children's care. Terrified, I called Ken and told him the news. The last I saw of Brynn for two days was when they brought her up to my room in an oxygen transport tank so I could say good-bye. Ken went to the other hospital and was told the news that she had a heart condition called Tricuspid Atresia. That means, she was born without a Tricuspid Valve (this valve regulates blood flow through the right two chambers of the heart.) Just 26 hours after her birth she went through the first of many procedures with Ken by her side. Needless to say, we were grief stricken. She stayed in the hospital for four more days and then we were able to take her home. The first part of her life we were at the doctors quite often. She has been through a series of heart catheterizations to monitor the pressures in her heart and lungs, sedated sonograms of her heart, x-rays, blood tests, and general checkups every two weeks. March 3, 2000, the doctors informed us they would need to perform open heart surgery to reconfigure the arteries. Originally they had said the ideal age to do this surgery would be when Brynn is six months of age, but Brynn's condition couldn't wait and they scheduled it for April 14, 2000. Two days before Brynn's scheduled surgery, the doctors office called and asked if we could reschedule her surgery a day earlier. Just one day earlier seemed like a lifetime. It was one less day we might have with our daughter. It was also my birthday. Reluctantly, we agreed and her surgery was set for April 13, 2000. The day before the surgery was difficult. Even though we were optimistic, we knew there was a chance she would not survive or would have organ/brain damage. We couldn't help thinking this might be the last time we would ever see her smile. Thursday morning, April 13, 2000, we brought Brynn to the hospital. Handing our baby over for this kind of operation was the hardest thing we've ever had to do. The procedure took six and a half hours and then we were finally able to see her. There she was, this tiny baby on life support, connected to IV's, machines, and oxygen. She didn't even look like Brynn. The first twelve hours after surgery were the most critical as far as complications go. She did excellent. Two days later and we had great news - the surgery was successful and she was now out of danger. Brynn stayed in the hospital for six more days. Brynn continues to do well until her checkup on October 1, 2001; she had failed to gain any weight in the past six months and her lips and fingers were turning bluer (which was a result of her oxygen being very low). Ken and I noticed she was getting more out of breath with activities but thought we would be doing the Fontan open heart surgery closer to the age of 4. Well, here she was, not even 2 years old. Her surgery date was set for December 17, 2001, just one day after her second birthday. My parents arrived from Texas to celebrate her birthday on December 16, 2001. After she ate ice cream and cake, we put her to sleep knowing things would be much different tomorrow. Later that evening, Father Bill and Ken's brother Kevin, flew in from Southern California. Father Bill performed mass for Brynn in our home and we asked God to heart our many prayers. With Brynn's first surgery at 4 months old, we were consumed with thoughts of her not making it. This time, we were much more positive. It was just inconceivable to imagine living without her. Our biggest concern was how much pain she would be in and how scary this would be for her. 5:30 am on December 17, 2001 and we were off to the hospital. Brynn was ready for an adventure and was bright and bubbly. She knew better when she saw the hospital. The idea of handing our baby over at 4 months of age for her first surgery was hard, but now it seemed impossible. Now, being 2 years old, Brynn was very aware and did not like hospitals or doctors. Luckily, they sedated her so that when it was time, it wouldn't be so traumatic. We also had the option to carry her into the operating room, but luckily she rode off in a wagon and was in la la land. We watched our daughter turn into the operating room and knew her life was in someone else's hands. Waiting is always difficult, but we were fortunate to be surrounded by many. Believe it or not, time passed quickly. Throughout the surgery we were given updates. When it was finally over and we were told the surgery was successful, we all celebrated with much cheering, high five's, hugs, and tears of joy and relief. With the surgery behind us, the danger was not over. Our next hurdle was getting Brynn off the ventilator and seeing if her body could breathe on its own. We were hopeful she would be extubated (taken off the ventilator) on Day 1, but she was not strong enough. Her body would not breathe on its over and also required assistance from a pacemaker. All of this was very frightening for her as well as uncomfortable. On Day 2 we were able to remove her ventilator and she was much happier. Her first word was "Hug" and we all gladly reciprocated. In face, she even "danced" in her bed. We all thought we had made it through the worst, but on Day 3 they had to put a drainage tube in her right chest cavity. Her lungs had collapsed and this would help drain the excess fluids. After that, she was in much more pain. We wanted Brynn to have constant companionship during her hospital stay and there was always someone by her side. Ken, myself, and my father all took shifts (my mother was at home with our daughter, Alexa, 7 months old). Day 4 and 5 were much better and then we were moved out of the Intensive Care and onto the regular floor. There she remained for 3 more days. We were all amazed at how well she handled the hospital and everything done to her. She was so brave and trusting. On the morning of Christmas Eve, we got the great news that Brynn was being discharged later that day. As with the first surgery, Brynn was on oxygen 24 hours a day which proved somewhat challenging with an active 2 year old! Three months after her last surgery, we planned a vacation to celebrate Brynn's health and bravery. We flew to Palm Springs, California and enjoyed a week of swimming, family time, etc. As with all vacations, we had a great time, but were excited to be heading home. As we did on our flight to Palm Springs, we boarded the plane and notified the flight attendant of our daughter's condition in case of an unlikely emergency. Immediately, the flight attendant said we could not fly with a heart defect. I was shocked and stated that of course she could fly. Brynn was approved to fly by her cardiologist and the airline was notified in advance. The flight attendant maintained her position and explained to me that by knowing about the defect, that it was a liability for the airline. I tried to everything to reassure her that my daughter was no greater risk than many other passengers on the plane and that she should not refuse to fly her. At that point, she threatened to call law enforcement and have us physically removed from the plane. We were left with no alternative, but to leave the plane. I was dumbfounded that this could have happened. Who could have ever imagined we would be asked to leave the plane with no other way home, simply because my daughter had a congenital heart defect. There we were, stranded. We examined every travel option and had to explain our daughter medical history and our current dilemma to perfect strangers. Our only saving grace was that Brynn was too young to understand why this was happening. After the humiliation of being asked to leave the plane, our only option was to rent a car. This, during spring break, when every car rental agency was sold out. Fortunately, after much begging, we received a car. During our 12 hour drive home, with Brynn and our 9 month old daughter, Alexa, we reflected on the reality that the airline viewed and treated our daughter and our family differently. This discrimination reminded us of every doubt filled and frightening moment that is attendant with having a child with a serious illness. We did not want this situation to ever happen again and vowed that the airline and its employees would not get away with this. The law was clear that their conduct was prohibited. Our goal was to resolve this situation without a lawsuit. We wanted to obtain reimbursement for our expenses and to determine what actions we needed to take in order to prevent similar discriminatory and illegal acts on other families and individuals with disabilities. We found ourselves in a situation where we did not want to "benefit" from this discrimination. The airline agreed to settle and our solution was to donate money to two important organizations. The first being, the Zachary Brooks CHD Endowment. The airline made a donation in our daughter's name for $2,500.00 to this organization started by a women who lost her son to CHD. The second organization is called CHIN, which stands for Congenital Heart Information Network. This is an international organization that provided reliable information, support services and resources to families of children with congenital and acquired heart disease, adults with CHD's, and professionals who work with them. We personally have met hundreds of families through this network. Again, the airline donated $500.00 to CHIN, in our daughter's name. Looking back, we are reassured to know that positive has come out of a negative situation. We have been able to educate the airline and their employees about congenital heart defects and discrimination, demand additional training and have helped two very important organizations in their quest to educate and research congenital heart defects. Today, Brynn is doing extremely well. She is a smart, beautiful little girl whose future is bright! Sincerely, Laura and Ken Kelter |
