Today marks the first day of Congenital Heart Defect Awareness Week (February 7-14) and in honor of this week, Carlie and the many children who are living with or have lost their life to a CHD, I would like to share some information with you and ask that you share it with others around you.
*CHDs are the #1 birth defect and the #1 cause of infant death related to birth defects. 1 in every 100 babies born will have a CHD (1 in every 800-1000 babies born has Down Syndrome).
*1 in 10 of those born with a CHD will have a fatal defect.
*In the US there are nearly twice as many deaths due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.
*The cost of inpatient surgery alone for CHDs exceeds 2.2 billion dollars per year.
*There are approximately 35 know Congenital Heart Defects.
*Causes for CHDs are still being studied. While there is no known definitive cause, it is said that both genetics and environmental factors can play a role. Scientists have actually identified over 100 mutations that are directly linked to the heart.
*There is no known cure for CHDs. However, the mortality rate after surgery has significantly decreased in the past 20-30 years. On average it is about 5% compared to the 30% it was. At the same time, the rate of incidence of CHDs has remained unchanged.
*With advances in medicine, many of those born with a CHD will have their first and sometimes only corrective surgery before age 2.
*Many of those living with a CHD go on to lead normal to near normal lives. Those with complex CHDs will also go on to lead longer and more active lives than before. Most will have some physical limitations, but almost all learn to move pass them.
*Only about 30% of the children who need a heart transplant receive one in time.
*About 40,000 units of blood are used every day yet only about 5% of the adults, the only ones who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children.
Showing posts with label CHD. Show all posts
Showing posts with label CHD. Show all posts
Monday, February 7, 2011
Tuesday, August 10, 2010
Cardiology Check-up
Carlie had her cardiology check-up today, her last one was in June 2009, and everything looked GREAT! Her echo showed that her heart is functioning very well! Her mitral valve continues to have a mild leak (which is great, at one point in our journey it was severe), which I assume she will always have because of the amount of work that valve does, and her oxygen saturations were registering 94/95%!! She is still on a dose of Enalapril, which I was hoping to drop this visit, but hopefully by our next one she will be able to come off of it (her cardiologist did say a while back that it is her goal to get her patients off of medications by the time they start school). Needless to say, I was very happy!! I still get nervous every time she has a check-up because you just never know; things can change so quickly! We continued to be blessed with her good health and we don't have to return for another check-up until next summer, before she starts Kindergarten!!!
Wednesday, May 19, 2010
Gabriella
During spring break, the girls and I had the opportunity to meet Kristi and her daughter Gabriella. We were first 'introduced' to each other through Andrea, Owen's mom. Andrea had asked if I knew of Gabriella and when I said no, she explained that she was waiting for a heart transplant and was being treated at Loma Linda. I immediately made contact with Kristi and found out they had a clinic visit coming up and they were planning on staying in Southern California for just over a week because the jet that would be flying them out (they are from the Phoneix area) if they 'got the call' was undergoing maintenance. Kristi is a DIE HARD Disney fan and explained that they would be spending a couple of days at Disneyland...what better place to meet each other?!? We hit it off right away and the girls fell in love with Gabriella and Kristi.
Gabriella and Caiteyn under Cruella's spell.
Standing in line for Toy Story.
Gabriella, Caiteyn and Carlie waiting for the Electrical Parade to start.Fast forward to April when Kristi and Gabriella had to travel back out to California for another clinic visit. They were lucky enough to be able to fly out this time and after Gabriella's check-up had a few hours to kill. I invited her over to our house to hang out for a bit which allowed Kristi and myself to do some catching up. We ended up going to dinner before their flight left and were having such a good time, that they almost missed their plane.
A few weeks ago, Kristi got 'the call' which turned out to be a false alarm. On Monday, May 17, she got another call and this time it was for real! I immediately sent her a text and explained to her that I would be at the hospital within a few hours. I was lucky enough to see and spend some time with Gabriella as they waited for the donor heart to make it back to the hospital. Gabriella, as well as Kristi and her husband, were so strong. Watching them say goodbye to their little girl before she left for surgery made my heart ache, it brought back so many memories.
Gabriella did great during surgery and 48 hours post-transplant, she is no longer intubated, is not requiring oxygen, has had her foley and arterial line removed, and is walking the halls...she is a strong little girl and I am so glad that she and her sweet family are a part of our lives!
Thursday, March 4, 2010
LLUCH Gala Pictures
The Loma Linda Children's Hospital Gala went well and was a nice night helping out our hospital that has helped us in so many ways. I guess I didn't realize just how big the event was, there was about 1,000 people there! They held both a silent auction and a live auction and raised about $675,000! I couldn't believe the generosity of the people who were there, it was amazing and inspiring!
My camera wasn't working properly so I didn't get the amount of pictures I had planned on, but my friends took some and passed them on to me...
Dr. Bailey and our family
Myself, Carlie and our good friend Robin (who adopted a sweet little girl with Shone's Complex)
Four Heart Families
Honoring Dr. Bailey and to his left, Teresa Beauclair, Baby Fae's mother. She gave heart families like us a gift when she sacrificed the life of her daughter for the future.
Saturday, February 27, 2010
LLUCH Gala
Every year, Loma Linda University Children's Hospital holds a black-tie optional gala to help raise money for the hospital. The theme this year is Got Heart!, to celebrate the 25th anniversary of the first pediatric heart transplant. As I have mentioned before, Dr. Bailey is Carlie's cardiothoracic surgeon and he was the first doctor to try, and later be successful, a pediatric heart transplant. So while the event will be raising money for the hospital, it will also honor Dr. Bailey and his accomplishments.
This past summer Carlie was invited to be part of a photo shoot that would be used for the gala. During the shoot, Carlie was being very uncooperative and I thought that the photographer would be lucky to get one good picture of her...imagine my surprise when I received this in the mail...
...not only did they get (and I really do think the only GOOD picture of her that day) a picture, but Carlie became the 'face' of the event and we couldn't be more honored to be part of such an important event.
This past summer Carlie was invited to be part of a photo shoot that would be used for the gala. During the shoot, Carlie was being very uncooperative and I thought that the photographer would be lucky to get one good picture of her...imagine my surprise when I received this in the mail...
...not only did they get (and I really do think the only GOOD picture of her that day) a picture, but Carlie became the 'face' of the event and we couldn't be more honored to be part of such an important event. Around November, we started receiving phone calls and emails from family and friends telling us that they had seen the picture of Carlie in the paper or in our local magazine but the biggest surprise was when I got a phone call from another heart mom asking me if she had just seen Carlie on a billboard (it was one of those digital billboards and she was driving so she wasn't completely sure if it was her or not), I told her that I had no idea. I sent my in-laws out to investigate because it was close to their home (about 30 miles from ours) and they emailed me this...
...I couldn't believe it! And then about a month and a half ago, another heart mom sent me this...
...which is a billboard very close to the hospital. Who knew that the ONE picture that the photographer got would show up all around town?! WE ARE SO HONORED TO HAVE OUR SURVIVOR BE PART OF SUCH AN IMPORTANT EVENT!
As much as we would love to be part of the event, it wasn't looking like we would be able to afford to go ($200 per person wasn't in our budget) when one of our favorite nurses was able to get a whole table donated to heart families! We are so excited to be able to spend the evening raising money for the hospital as well as honoring such an important man in our lives, Dr. Bailey.
Pictures from the event will be coming soon!
Wednesday, February 10, 2010
Did you ever wonder how mothers of disabled children were chosen?
After Carlie was born, someone shared this beautiful poem with me (which makes me cry every time I read it) and it has become one of my favorite poems and so I would like to share it with all of the Heart Moms, as well as any mother who has a child with a disability...enjoy.
Did you ever wonder how mothers of disabled children were chosen?
Somehow I visualize God hovering over the Earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"This one gets a daughter. The Patron saint will be Cecelia."
"This one gets twins. The Patron saint will be Matthew."
"This one gets a son. The Patron saint…give her Gerard. He is used to profanity"
Finally He passes a name to an angel and smiles, "Give her a disabled child." The angel is curious, "Why this one God? She's so happy."
"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today; she has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."
The angel gasps - "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time, she will be present at a miracle and will know it! I will permit her to see clearly the things I see...ignorance, cruelty, and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as if she is here by my side."
"And what about her Patron saint?" Asks the angel, his pen poised in mid air.
God smiles, "A mirror will suffice."
Did you ever wonder how mothers of disabled children were chosen?
Somehow I visualize God hovering over the Earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"This one gets a daughter. The Patron saint will be Cecelia."
"This one gets twins. The Patron saint will be Matthew."
"This one gets a son. The Patron saint…give her Gerard. He is used to profanity"
Finally He passes a name to an angel and smiles, "Give her a disabled child." The angel is curious, "Why this one God? She's so happy."
"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today; she has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."
The angel gasps - "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time, she will be present at a miracle and will know it! I will permit her to see clearly the things I see...ignorance, cruelty, and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as if she is here by my side."
"And what about her Patron saint?" Asks the angel, his pen poised in mid air.
God smiles, "A mirror will suffice."
Sunday, February 7, 2010
CHD Awareness Week
Today marks the first day of Congenital Heart Defect Awareness Week (February 7-14) and in honor of this week, Carlie and the many children who are living with or have lost their life to a CHD, I would like to share some information with you and ask that you share it with others around you.
*CHDs are the #1 birth defect and the #1 cause of infant death related to birth defects. 1 in every 100 babies born will have a CHD (1 in every 800-1000 babies born has Down Syndrome).
*1 in 10 of those born with a CHD will have a fatal defect.
*In the US there are nearly twice as many deaths due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.
*The cost of inpatient surgery alone for CHDs exceeds 2.2 billion dollars per year.
*There are approximately 35 know Congenital Heart Defects.
*Causes for CHDs are still being studied. While there is no known definitive cause, it is said that both genetics and environmental factors can play a role. Scientists have actually identified over 100 mutations that are directly linked to the heart.
*There is no known cure for CHDs. However, the mortality rate after surgery has significantly decreased in the past 20-30 years. On average it is about 5% compared to the 30% it was. At the same time, the rate of incidence of CHDs has remained unchanged.
*With advances in medicine, many of those born with a CHD will have their first and sometimes only corrective surgery before age 2.
*Many of those living with a CHD go on to lead normal to near normal lives. Those with complex CHDs will also go on to lead longer and more active lives than before. Most will have some physical limitations, but almost all learn to move pass them.
*Only about 30% of the children who need a heart transplant receive one in time.
*About 40,000 units of blood are used every day yet only about 5% of the adults, the only ones who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children.
*CHDs are the #1 birth defect and the #1 cause of infant death related to birth defects. 1 in every 100 babies born will have a CHD (1 in every 800-1000 babies born has Down Syndrome).
*1 in 10 of those born with a CHD will have a fatal defect.
*In the US there are nearly twice as many deaths due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.
*The cost of inpatient surgery alone for CHDs exceeds 2.2 billion dollars per year.
*There are approximately 35 know Congenital Heart Defects.
*Causes for CHDs are still being studied. While there is no known definitive cause, it is said that both genetics and environmental factors can play a role. Scientists have actually identified over 100 mutations that are directly linked to the heart.
*There is no known cure for CHDs. However, the mortality rate after surgery has significantly decreased in the past 20-30 years. On average it is about 5% compared to the 30% it was. At the same time, the rate of incidence of CHDs has remained unchanged.
*With advances in medicine, many of those born with a CHD will have their first and sometimes only corrective surgery before age 2.
*Many of those living with a CHD go on to lead normal to near normal lives. Those with complex CHDs will also go on to lead longer and more active lives than before. Most will have some physical limitations, but almost all learn to move pass them.
*Only about 30% of the children who need a heart transplant receive one in time.
*About 40,000 units of blood are used every day yet only about 5% of the adults, the only ones who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children.
Saturday, January 16, 2010
Two years post-Fontan...
...and life is SWEET! Happy 2nd 'Fontan'niversary Carlie...you are a MIRACLE!
Friday, January 8, 2010
I 'Heart' Heart Families!
I LOVE living in Southern California! Many people choose this area as a vacation spot which allows me the perfect opportunity to meet other heart families. Last year I was able to meet the Allred Family when they decided to take a Disneyland trip. I enjoyed spending time with them and the girls had so much fun with their 'Seattle friends' as well. We had great time getting to know each other and sharing our experiences.
Maddie and Carlie, January 2009
Just before Christmas, I received an email saying that they would be visiting the area again, I was so thrilled! So last week, the girls and I drove down to Oceanside to hang out with the Allred Family again! Being around their family feels so natural, like I have known them for years. Katie and I were able to talk about things so easily and again, the girls had so much fun with their friends; I told Katie that I could get use to them visiting once a year! Thank you so much Allred Family for allowing us to spend time with you...you are so kind and I hope to see you again very soon! 
Maddie and Carlie, January 2010 (Maddie wasn't very interested in having her picture taken)
A few days later, we drove out to Disneyland to hang out with the Ridgway Family. We have met them a handful of times during their previous Disneyland visits and this time they had their new addition with them, sweet Kanyon. The girls always enjoy seeing their Arizona friends especially since their girls and Caiteyn and Carlie are so close in age. Our visit was a short one, but just as fun!
Caiteyn, Emerson, Ainsley and their friend Tucker waiting in line for Toy Story.
Monday, October 26, 2009
25 Years Ago...
Today marks a very special day…25 years ago, Baby Fae, born with Hypoplastic Left Heart Syndrome, received a heart transplant. Back then, there were little to no options for a child born with HLHS as the Norwood had only been performed on a few babies without much success. Baby Fae’s transplant, done by Dr. Leonard Bailey (Carlie’s surgeon), has paved the way for MANY of our heart children. The 3 staged surgeries that are performed today to “repair” the heart were very new and still considered experimental. A successful heart transplant had never been performed on a newborn and parents with these special children were often told to take their babies home to die. Boston and Philadelphia were offering the Norwood procedure, followed by the Fontan (the Glenn or Hemi-Fontan was not being done at the time) but the statistics were not very promising. In a published study of 130 babies, 55 survived the Norwood and only four went on to have the Fontan, in which 2 survived! As a heart parent, I am thankful for how far research and technology have come and even more thankful to those parents and children who were the pioneers; many of our heat babies would not be here today if it weren’t for you!
Here is an article about Dr. Bailey and Baby Fae that was published in a local newspaper this morning…
Twenty-five years ago today, the eyes of the world were on a baby girl who needed a heart. Some were critical, many supportive. And although Stephanie Fae Beauclair died 21 days after receiving a baboon heart, more than 500 young patients since have received heart transplants at Loma Linda University Medical Center. "The bottom line is Baby Fae's legacy is a strong one - there have been several thousand babies salvaged now who would not (have made it) otherwise," said Dr. Leonard Bailey, who headed the transplant team 25 years ago. "I think she sent word around the world that people should think about newborns, too."
Bailey and his colleagues began experimenting with heart transplantation in animals in the late 1970s. "We got a lot of baseline data on how newborns do even without medications. They do better than my age," said Bailey, surgeon-in-chief at Loma Linda University Children's Hospital. He and other researchers knew they would deal with a "naive" immune system that would reject an organ at a different pace. Then, Swiss researchers sent them an experimental anti-rejection drug called cyclosporin. They did more research on animals and found those with heart transplants could grow and have babies. "Then we knew we were onto something - and how to translate that into real life for human beings?" Bailey said Thursday before an afternoon surgery. "No one was (talking) about doing heart transplants, let alone in infants." They looked at primates, then narrowed it down to baboons because 80 percent of their DNA is the same as human DNA. Further lab tests revealed low reactivity between baboons and humans. "In Baby Fae's case her reactivity was even lower than her father's was to her," said Bailey, who lives in Redlands. "She responded quite weakly to the donor and that's how we selected the donor for her transplant."
On the morning of October 26, 1984, Bailey transplanted a baboon heart into "Baby Fae," born 12 days earlier in the Barstow area with a fatal condition called Hypoplastic Left Heart Syndrome. "The technical features of it all went well," Bailey said. "She was waking up, a couple days later she was off the ventilator, eating," he said. He and his colleagues had learned to administer cyclosporin to humans so Baby Fae would not reject her new heart. As she recovered, news spread around the world, bringing the media and protestors to the medical center. "The media scrutinized Dr. Bailey and everything he did," said Marie Hodgkins, a nurse who managed the cardiothoracic unit Baby Fae was on. The nursing staff was not prepared for the onslaught of attention, and the subsequent security measures. But Hodgkins' team focused on taking care of Baby Fae, and Hodgkins talked with Baby Fae's mother, Teresa. The outside environment was not so peaceful. Staff had to wade through picketers and the press, and had to show credentials to get into the unit, Hodgkins said. "I was trying to keep the unit as calm and basically as normal as possible," said Hodgkins. Hodgkins watched Bailey being grilled at press conferences. His home was also picketed and police kept watch on his family. "I'd look at him and see how tired he was - he was either up in the unit or sleeping in a bed (up there) so he could be there at the drop of a hat if need be," Hodgkins said. "I would sit there and listen to what he had to do to justify what he did," she said. "It was hard because I wanted to stand up and say, `Leave him alone - he needs his energy to take care of this baby.' "
Bailey's concern was, after a few days of doing well, the baby's kidneys began to fail, then other organs, and her condition worsened. "The last thing that gave up, on her last day of life, was her heart," Bailey said. "It was very disheartening to me and the rest of the team - it was not like any experience we had in the lab," Bailey said. "I don't know to this day what went wrong - but it's hard to attribute to rejection." A memorial service was held for little Stephanie Fae Beauclair at the Loma Linda University Church. "It was huge - it really helped to bring some closure to our organization," Hodgkins said. "She was an adorable baby we bonded with." Hodgkins finally had a chance to get to know Teresa Beauclair last year. "I said `Teresa, you are very aware, I hope, of what you started,' " she said. Beauclair, who chose anonymity at the time of the surgery, visited the unit where her baby stayed and will speak publicly for the first time on October 31. "She said, `I never thought of that,' and I could see her begin to realize," Hodgkins said. Beauclair asked Bailey to continue his research, and he did, although he and his team would never do another "cross-species" heart transplant, partly because of new FDA regulations. "I do regret not replicating the Baby Fae operation - we could have done it better on the next one," Bailey said.
In November 1985, Bailey and his team transplanted a human heart into "Baby Moses," who was from the Bay Area. "In those days those babies were set aside to die, and he was well along the way to dying when I discovered him," Bailey said. Baby Moses lives in Las Vegas and turns 24 in November. "He still has the same little heart ticking away," Bailey said. As Loma Linda University became known for pediatric heart transplants, staff did not have to go as far for donor hearts. The medical center does 15 to 20 a year, Bailey said. "It did get Loma Linda's name out there but I know that's in no way why it was done," Hodgkins said. "It was done to help babies."
Bailey has also met some of his patients, many of whom have grown up, completed high school, married and had children. "For these little newborns it means a lifetime and I hope it's long. The system is not perfect - some just have a miserable time," he said. "For those that stay with the program and take their medication, there are many examples of them being (active) citizens." Organ transplant has become more sophisticated in the last 25 years, and Bailey said advanced immune system medicine is around the corner. "We're doing better than ever in history and are limited largely by a clear understanding of immunology," he said. A new advance would involve intrinsic acceptance, he said. No matter what the improvements, he said the medical center's transplant work still relies on organ donation. "It's tragic another baby or child has died, but the help to families who participate in donation develops closure to the loss they've had," he said. Transplants are only 5 percent of what the medical center does, but Baby Fae gave that work a face. "Any critic of what was done needs to look at the program," Hodgkins said.
Events will be held throughout the year to mark the 25th anniversary, including Beauclair's first public appearance on October 31 as part of the centennial celebration of the Loma Linda University School of Medicine. The Children's Hospital Foundation's annual gala, "Got Heart," will feature some of the heart transplant patients on February 27, 2010. "Stephanie's Heart," a 30-minute documentary about Stephanie Fae and Teresa Beauclair, will premiere at 4 PM Saturday, October 31, at Loma Linda University Seventh-day Adventist Church. It will air on PBS - KVCR Channel 24 - November 2 and 8, Monday at 7:30 PM and Sunday at 4:30 PM (You can see a trailer for the movie here...)
Here is an article about Dr. Bailey and Baby Fae that was published in a local newspaper this morning…
Twenty-five years ago today, the eyes of the world were on a baby girl who needed a heart. Some were critical, many supportive. And although Stephanie Fae Beauclair died 21 days after receiving a baboon heart, more than 500 young patients since have received heart transplants at Loma Linda University Medical Center. "The bottom line is Baby Fae's legacy is a strong one - there have been several thousand babies salvaged now who would not (have made it) otherwise," said Dr. Leonard Bailey, who headed the transplant team 25 years ago. "I think she sent word around the world that people should think about newborns, too."
Bailey and his colleagues began experimenting with heart transplantation in animals in the late 1970s. "We got a lot of baseline data on how newborns do even without medications. They do better than my age," said Bailey, surgeon-in-chief at Loma Linda University Children's Hospital. He and other researchers knew they would deal with a "naive" immune system that would reject an organ at a different pace. Then, Swiss researchers sent them an experimental anti-rejection drug called cyclosporin. They did more research on animals and found those with heart transplants could grow and have babies. "Then we knew we were onto something - and how to translate that into real life for human beings?" Bailey said Thursday before an afternoon surgery. "No one was (talking) about doing heart transplants, let alone in infants." They looked at primates, then narrowed it down to baboons because 80 percent of their DNA is the same as human DNA. Further lab tests revealed low reactivity between baboons and humans. "In Baby Fae's case her reactivity was even lower than her father's was to her," said Bailey, who lives in Redlands. "She responded quite weakly to the donor and that's how we selected the donor for her transplant."
On the morning of October 26, 1984, Bailey transplanted a baboon heart into "Baby Fae," born 12 days earlier in the Barstow area with a fatal condition called Hypoplastic Left Heart Syndrome. "The technical features of it all went well," Bailey said. "She was waking up, a couple days later she was off the ventilator, eating," he said. He and his colleagues had learned to administer cyclosporin to humans so Baby Fae would not reject her new heart. As she recovered, news spread around the world, bringing the media and protestors to the medical center. "The media scrutinized Dr. Bailey and everything he did," said Marie Hodgkins, a nurse who managed the cardiothoracic unit Baby Fae was on. The nursing staff was not prepared for the onslaught of attention, and the subsequent security measures. But Hodgkins' team focused on taking care of Baby Fae, and Hodgkins talked with Baby Fae's mother, Teresa. The outside environment was not so peaceful. Staff had to wade through picketers and the press, and had to show credentials to get into the unit, Hodgkins said. "I was trying to keep the unit as calm and basically as normal as possible," said Hodgkins. Hodgkins watched Bailey being grilled at press conferences. His home was also picketed and police kept watch on his family. "I'd look at him and see how tired he was - he was either up in the unit or sleeping in a bed (up there) so he could be there at the drop of a hat if need be," Hodgkins said. "I would sit there and listen to what he had to do to justify what he did," she said. "It was hard because I wanted to stand up and say, `Leave him alone - he needs his energy to take care of this baby.' "
Bailey's concern was, after a few days of doing well, the baby's kidneys began to fail, then other organs, and her condition worsened. "The last thing that gave up, on her last day of life, was her heart," Bailey said. "It was very disheartening to me and the rest of the team - it was not like any experience we had in the lab," Bailey said. "I don't know to this day what went wrong - but it's hard to attribute to rejection." A memorial service was held for little Stephanie Fae Beauclair at the Loma Linda University Church. "It was huge - it really helped to bring some closure to our organization," Hodgkins said. "She was an adorable baby we bonded with." Hodgkins finally had a chance to get to know Teresa Beauclair last year. "I said `Teresa, you are very aware, I hope, of what you started,' " she said. Beauclair, who chose anonymity at the time of the surgery, visited the unit where her baby stayed and will speak publicly for the first time on October 31. "She said, `I never thought of that,' and I could see her begin to realize," Hodgkins said. Beauclair asked Bailey to continue his research, and he did, although he and his team would never do another "cross-species" heart transplant, partly because of new FDA regulations. "I do regret not replicating the Baby Fae operation - we could have done it better on the next one," Bailey said.
In November 1985, Bailey and his team transplanted a human heart into "Baby Moses," who was from the Bay Area. "In those days those babies were set aside to die, and he was well along the way to dying when I discovered him," Bailey said. Baby Moses lives in Las Vegas and turns 24 in November. "He still has the same little heart ticking away," Bailey said. As Loma Linda University became known for pediatric heart transplants, staff did not have to go as far for donor hearts. The medical center does 15 to 20 a year, Bailey said. "It did get Loma Linda's name out there but I know that's in no way why it was done," Hodgkins said. "It was done to help babies."
Bailey has also met some of his patients, many of whom have grown up, completed high school, married and had children. "For these little newborns it means a lifetime and I hope it's long. The system is not perfect - some just have a miserable time," he said. "For those that stay with the program and take their medication, there are many examples of them being (active) citizens." Organ transplant has become more sophisticated in the last 25 years, and Bailey said advanced immune system medicine is around the corner. "We're doing better than ever in history and are limited largely by a clear understanding of immunology," he said. A new advance would involve intrinsic acceptance, he said. No matter what the improvements, he said the medical center's transplant work still relies on organ donation. "It's tragic another baby or child has died, but the help to families who participate in donation develops closure to the loss they've had," he said. Transplants are only 5 percent of what the medical center does, but Baby Fae gave that work a face. "Any critic of what was done needs to look at the program," Hodgkins said.
Events will be held throughout the year to mark the 25th anniversary, including Beauclair's first public appearance on October 31 as part of the centennial celebration of the Loma Linda University School of Medicine. The Children's Hospital Foundation's annual gala, "Got Heart," will feature some of the heart transplant patients on February 27, 2010. "Stephanie's Heart," a 30-minute documentary about Stephanie Fae and Teresa Beauclair, will premiere at 4 PM Saturday, October 31, at Loma Linda University Seventh-day Adventist Church. It will air on PBS - KVCR Channel 24 - November 2 and 8, Monday at 7:30 PM and Sunday at 4:30 PM (You can see a trailer for the movie here...)
Tuesday, June 23, 2009
Cardiology Check-up
Today went VERY WELL! Carlie did great during her echo and the tech was able to get the pictures she needed pretty quickly. After her echo, we headed over to the heart institute to meet with Dr. Mulla. Carlie weighed in at 30 pounds (one more pound than six months ago), 36 1/2 inches tall and sats between 95/96. Dr. Mulla was very pleased with the function of Carlie's heart and the fact that her mitral valve regurgitation was mild. She was officially taken off her Lasix (I had not been giving full doses because of potty training, which was okay with Dr. Mulla) and her Enalapril was kept the same; Dr. Mulla stated that it is her goal to have her patients off all medications by school age. The best news of all...Carlie doesn't need to go back for another check-up for a whole year! It's crazy to think that just three years ago, we were making weekly visits and now yearly visits?!? We are blessed and God is GOOD!
Monday, June 22, 2009
Cardiology Visit
Tomorrow afternoon we'll be heading to the hospital for Carlie's echo and cardiology check-up. Our last visit was in December (and we walked away with nothing but great news!) and I am expecting nothing but good news this go around, but I still get so nervous during check-ups because things can change so quick. Please keep Carlie in your prayers tomorrow and I will be sure to give an update when we make it home.
As for Lindsay and Zachary, they are both doing wonderful! Lindsay came off ECMO last Wednesday and was extubated yesterday! JR, Lindsay's dad, got to the best Father's Day gift yesterday when he got to hold his princess again. Zachary was extubated on Saturday and was being moved to 'the floor' today...they are both such strong little fighters! Please continue to keep them both in your prayers.
As for Lindsay and Zachary, they are both doing wonderful! Lindsay came off ECMO last Wednesday and was extubated yesterday! JR, Lindsay's dad, got to the best Father's Day gift yesterday when he got to hold his princess again. Zachary was extubated on Saturday and was being moved to 'the floor' today...they are both such strong little fighters! Please continue to keep them both in your prayers.
Tuesday, June 16, 2009
Swim Class and prayers for Lindsay and Zachary
Today was the first day of swim class for the girls. We were supposed to start yesterday but the pool heater was broke and by the feel of the water, it was still broke! The water was so cold that Carlie's lips turned a pretty shade of purple and she couldn't keep her teeth from chattering. I wasn't able to get any pictures of the girls today because Carlie and I are doing a Mommy and me class (because her chin doesn't reach 36") while Caiteyn is over on the other side of the pool with her class. Mike said that Friday (his day off) he would get in the water with Carlie so hopefully I’ll be able to get some pictures then. Caiteyn said that she had fun, but is hoping that tomorrow will be more fun. I explained to her that she isn't there to play, but to learn how to swim. Up until about a month ago, she was terrified to put her face under water so I'm hoping that this class will give her more confidence in the water. Carlie on the other hand is usually pretty daring around the water but today she didn't want to do much of anything. She kept saying that she was cold and hungry so I'm hoping this is what kept her from being the wild child that she is.
As for Lindsay, Suzie (Lindsay's mom) posted an update last night saying that Lindsay is still on ECMO but that her heart, brain, and kidneys were all doing well as of late last night. Suzie hasn't given an update for today, so I'm praying that things are well. Please keep this little princess in your thoughts and prayers.
I would also like to ask you to keep a sweet little boy named Zachary in your prayers. Tomorrow he will be going in for his Hemi-Fontan (or Glenn procedure) and I know from experience that it is never easy to hand over your sweet baby for surgery.
As for Lindsay, Suzie (Lindsay's mom) posted an update last night saying that Lindsay is still on ECMO but that her heart, brain, and kidneys were all doing well as of late last night. Suzie hasn't given an update for today, so I'm praying that things are well. Please keep this little princess in your thoughts and prayers.
I would also like to ask you to keep a sweet little boy named Zachary in your prayers. Tomorrow he will be going in for his Hemi-Fontan (or Glenn procedure) and I know from experience that it is never easy to hand over your sweet baby for surgery.
Monday, June 15, 2009
Lindsay needs prayers!
Lindsay's recovery from her heart transplant almost two weeks ago was going great and her family was even making preparations for home when her parents got a call around 7:00 this morning saying that Lindsay was having trouble and for them to head over. The doctors think that she had a seizure and had to perform chest compressions, as a result she was placed on ECMO (life support). Please pray for the sweet little girl and her family...
Thursday, June 4, 2009
Lindsay
Tonight sweet Lindsay will be receiving her new heart! Lindsay was born with HLHS and placed on the transplant list in November 2008 after it was determined that her heart function was too poor to have any further surgical repair. She has been in the hospital for several months and will be celebrating her first birthday on June 11...what a precious gift she is about to receive. Please keep Lindsay as well as her donor family in your prayers...
Wednesday, April 29, 2009
The Ridgways
Last week I received a text message from Keisa (Eden's mommy) saying that they were on their way to California for a Disneyland trip. Our first meeting went so well, the girls and I has so much fun with them, I was more than thrilled to see them again. So on Friday the girls and I headed out to Anaheim to meet up with the Ridgways again. As soon as the girls saw each other, they picked up right where they left off as if they had just seen each other yesterday. They walked around the rest of the day talking and holding hands. We can't wait until their next visit, which will include their newest addition! Until then...
Monday, April 6, 2009
Lauren Hope
Update: April 7, 2009, 3:30 PM
Camille sounded very relieved, as we all are after we see our child after surgery, and upbeat. Thank you for your continued prayers for Lauren and her family.
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Tomorrow Lauren, a very dear heart friend of ours, will be going in for her Fontan. Lauren's mom Camille and I met through an online support group and soon discovered that we not only live in the same city, but right down the street from each other. Please keep this precious little girl in your prayers tomorrow, as well as her parents, Race and Camille, and Lauren's older siblings Noah and Juliet as they have a very hard time coping when Lauren is in the hospital.
I just got off the phone with Camille and she said that Lauren is doing well. She came out of surgery around noon extubated but had problems with her body warming up so they had to reintubate her for a brief time. She is now resting, asking for water and for her momma to hold her. Her heart rate is a little high but the staff believes that it is because she needs extra fluids. Lauren also has LPA stenosis and unfortunately Dr. Bailey wasn't able to repair it during surgery, so on Thursday Lauren will have to go down to the cath lab so that a stent can be placed in her LPA.
Camille sounded very relieved, as we all are after we see our child after surgery, and upbeat. Thank you for your continued prayers for Lauren and her family.
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Tomorrow Lauren, a very dear heart friend of ours, will be going in for her Fontan. Lauren's mom Camille and I met through an online support group and soon discovered that we not only live in the same city, but right down the street from each other. Please keep this precious little girl in your prayers tomorrow, as well as her parents, Race and Camille, and Lauren's older siblings Noah and Juliet as they have a very hard time coping when Lauren is in the hospital.
Tuesday, March 3, 2009
Tuesday, February 24, 2009
Gracie
Those of you who are part of the heart community already know of Gracie's story. For those of you who have never visited her blog, she and her family could use a ton of prayers right now. Gracie received her new heart on Sunday after only being on the list for three short days. She was supposed to have her Glenn surgery earlier this month but after a heart cath, it was determined that she was no longer a candidate for the three staged surgeries. Unfortunately, her new heart isn't doing well and she is currently on ECMO. The doctors have decided that she CAN be listed for another heart transplant and so, she and her family wait again. This little girl has been through so much in her very short life...please pray for her!
Tuesday, February 17, 2009
Dressing Up Red
This past Sunday there was an event put on by Big Hearts for Little Hearts Loma Linda Guild called "Dressing Up Red". It was an event held at the hospital to help raise money for the PCICU (Wal-Mart donated a check for $15,000!) as well as provide an opportunity for women of all ages to learn how to be heart healthy. There were about 175 people who showed up and many of them were other heart families. It was amazing to see so many other heart babies who are now living as young children and adults...truly inspiring. Dr. Bailey stopped by to give a small speech, and he was quickly greeted and surrounded by just about every family there as if he were a rock star; he is our "Rock Star" for sure! It was great meeting other families and I look forward to next year's event.
Unfortunately I didn't get a lot of pictures because Carlie was grumpy, Carlie fell asleep on me, and my battery died. A couple of the other moms that were there are going to email me some of the pictures that were taken, and when I get them, I would love to share them with you. Until then, here are the few I managed to get...
Unfortunately I didn't get a lot of pictures because Carlie was grumpy, Carlie fell asleep on me, and my battery died. A couple of the other moms that were there are going to email me some of the pictures that were taken, and when I get them, I would love to share them with you. Until then, here are the few I managed to get...
Carlie before we left the house.
Caiteyn before the event.
Caiteyn having make-up put on for her picture.
All dressed up.
Miss Peyton (Shone's Complex)
Sweet Lauren (Shone's Complex)
At home after the fun.
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