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Dear Family and Friends,
As many of you are aware, we are expecting a baby girl this April. Our family will grow to 6 as Blake (15 mo), Camden (12 yrs) and Julian (14 yrs) welcome their sister. A few months ago, we got the sad news that our baby girl has 22q11.2 deletion syndrome. This syndrome is a chromosomal abnormality caused by the deletion of a small segment of chromosome 22. 74% of individuals born with this syndrome experience heart abnormalities, among other things. We have chosen this forum to let you know what we have been going through these past few months and share with you what we know thus far. It has been extremely difficult and emotional for us with so many things unknown and we haven’t wanted to burden or worry any of you.
We have seen specialists from genetic counselors to high risk obstetricians and pediatric cardiologists and have undergone many tests. Recently, one of our worst fears was confirmed. Our baby girl has a very complicated heart defect. Her specific defect is called Tetralogy of Fallot with pulmonary atresia and major aortopulmonary collateral arteries (TOF/PA/MAPCAs) and she will require open heart surgery. Because of the complexity of the heart surgery our baby will need, we will be giving birth at Lucile Packard Children’s Hospital Stanford in Palo Alto, CA.
Just this last week we traveled to Stanford to meet with a cardiologist and the head surgeon and Children’s Heart Center Director, Frank L. Hanley, M.D. Kristin will be required to relocate to the Palo Alto area prior to our baby’s birth and we have started to look into housing options so we can be close to the hospital. After our baby is born, she will quickly be taken the NICU where they will begin testing to assess her and determine how quickly she will need to undergo surgery. Surgery may be needed within the first week of her life or at 4 months old. The surgery she will have called unifocalization can take from 10-20 hours and is highly complicated. Although being away from home will be tough, we are fortunate that the surgery our baby will undergo was developed and pioneered by Frank Hanley at Stanford so we know she will be in the best possible hands.
We are asking for your kindness and any support you can offer to help us fund the upcoming surgery and future surgeries that our baby will have to undergo. Unfortunately, our medical insurance will not cover all of her medical expenses. Every single dollar raised will go towards her upcoming surgery, subsequent surgeries and medical bills. We have a very uncertain and long road ahead and naturally, like all parents, want to be able to provide our daughter with the best possible care and life we can.
Our wonderful family and friends are organizing a dinner fundraiser on Saturday, March 30th in El Dorado Hills, CA. Please save the date and look for an invite which will be coming soon. We hope that that you will be able to come to join us for a fun night and bring your friends and family. We have set up a bank account at Wells Fargo to accept donations made at the event. We hope you will share our story and fundraiser with your network. If you can’t attend the event or make a donation, if you could please send up prayers for our baby girl, we would greatly appreciate it.
God Bless each and every one of you and thank you for your time, support and all of your prayers.
Love,
Shawn & Kristin
As many of you are aware, we are expecting a baby girl this April. Our family will grow to 6 as Blake (15 mo), Camden (12 yrs) and Julian (14 yrs) welcome their sister. A few months ago, we got the sad news that our baby girl has 22q11.2 deletion syndrome. This syndrome is a chromosomal abnormality caused by the deletion of a small segment of chromosome 22. 74% of individuals born with this syndrome experience heart abnormalities, among other things. We have chosen this forum to let you know what we have been going through these past few months and share with you what we know thus far. It has been extremely difficult and emotional for us with so many things unknown and we haven’t wanted to burden or worry any of you.
We have seen specialists from genetic counselors to high risk obstetricians and pediatric cardiologists and have undergone many tests. Recently, one of our worst fears was confirmed. Our baby girl has a very complicated heart defect. Her specific defect is called Tetralogy of Fallot with pulmonary atresia and major aortopulmonary collateral arteries (TOF/PA/MAPCAs) and she will require open heart surgery. Because of the complexity of the heart surgery our baby will need, we will be giving birth at Lucile Packard Children’s Hospital Stanford in Palo Alto, CA.
Just this last week we traveled to Stanford to meet with a cardiologist and the head surgeon and Children’s Heart Center Director, Frank L. Hanley, M.D. Kristin will be required to relocate to the Palo Alto area prior to our baby’s birth and we have started to look into housing options so we can be close to the hospital. After our baby is born, she will quickly be taken the NICU where they will begin testing to assess her and determine how quickly she will need to undergo surgery. Surgery may be needed within the first week of her life or at 4 months old. The surgery she will have called unifocalization can take from 10-20 hours and is highly complicated. Although being away from home will be tough, we are fortunate that the surgery our baby will undergo was developed and pioneered by Frank Hanley at Stanford so we know she will be in the best possible hands.
We are asking for your kindness and any support you can offer to help us fund the upcoming surgery and future surgeries that our baby will have to undergo. Unfortunately, our medical insurance will not cover all of her medical expenses. Every single dollar raised will go towards her upcoming surgery, subsequent surgeries and medical bills. We have a very uncertain and long road ahead and naturally, like all parents, want to be able to provide our daughter with the best possible care and life we can.
Our wonderful family and friends are organizing a dinner fundraiser on Saturday, March 30th in El Dorado Hills, CA. Please save the date and look for an invite which will be coming soon. We hope that that you will be able to come to join us for a fun night and bring your friends and family. We have set up a bank account at Wells Fargo to accept donations made at the event. We hope you will share our story and fundraiser with your network. If you can’t attend the event or make a donation, if you could please send up prayers for our baby girl, we would greatly appreciate it.
God Bless each and every one of you and thank you for your time, support and all of your prayers.
Love,
Shawn & Kristin