- M
At our 20 week anatomy scan on December 21, 2018 we received information that changed our lives forever. Our son was diagnosed with a Congenital Diaphragmatic Hernia (CDH) which is a defect that occurs when the diaphragm doesn’t properly form during fetal development resulting in abdominal organs that shift upward into the chest cavity and putting extra pressure on the lungs which cause them not to grow. As soon as we heard these three life changing words come from the MFM doctor, things seemed to get worse as she kept talking. Before anything else, she asked us how we felt about terminating our pregnancy because the chance of our sons survival out of the womb with this kind of diagnosis was very slim. After being asked that, my husband and I asked that we could have a few minutes to pull ourselves together and talk in private about the news we had just gotten. We were fairly certain that our son was basically just handed a death sentence.
The first week after the diagnosis was extremely rough, but after receiving the news, we were determined to do some research on the condition and reach out to other parents who have been in our shoes. After joining the global support group for CDH on Facebook, we became more hopeful with our sons diagnosis and knew it wasn’t a death sentence because there was hope! CDH comes with a national survival rate of about 40-50% but every case is different and survival percentage is based on being more severe or less severe.
After finding others who have experienced this condition with their own little loved ones and confiding in them through the CDH support group on Facebook, we have gained a lot of insight and knowledge on this condition and are much more confident that with choosing the right hospital and specialty team for our little super hero, he will stand a chance and pull through.
With many recommendations through the Facebook support group and hearing success story after success story, we called and scheduled our appointment for a second opinion with Children’s Hospital of Philadelphia. At our appointment on January 8, 2019, I went through several lengthy tests and scans so that our baby was thoroughly looked at. After being there for 8 hours of testing, we finally met with Dr. Johnson who went over our results and percentages with us. Bryan and I sat there for 30 minutes with our stomach in knots while Dr. Johnson drew out diagram after diagram of a normal babies anatomy vs. a baby with CDH. We were impatient while waiting to hear how severe our sons defect was.
Dr. Johnson finally began to explain our sons condition and the findings from our mri, 3 hour anatomy scan and echocardiogram. He told us the total lung volume from the mri showed good numbers for the baby’s gestational age and also showed that the baby did in fact have lung function on both sides which doesn’t always happen with a lot of CDH babies. The mri/ultrasound also confirmed that our baby’s liver was down with just the tip of it up which also changed things a little. The liver actually has a lot to do with the severity of these cases and if it is up, the outcomes and survival rates are different. Then came the news about our sons heart. MFM locally where we live told us the baby also had an undetermined heart defect along with CDH, and only one kidney that they found to be “echogenic”. Dr. Johnson reassured us that what we were dealing with was isolated CDH. Our baby had a perfectly healthy heart which was just misplaced due to the CDH and had two working kidneys. Bryan and I felt such a sigh of relief after hearing those words.
After meeting with Dr. Johnson, we met with Dr. Adzick who is the head surgeon of their CDH program at CHOP. He is the surgeon who will be caring for our son as soon as he is born and for the many weeks and months after. Dr. Adzick did not give us unrealistic expectations, however, his truth gives our son a much more fighting chance at not only surviving but surviving and living a normal life. Dr. Adzick told us our son is one of the better cases of this they have seen and gave him about an 85-90% chance so here begins our journey with CHOP.
On April 1, 2019 when I am 34 weeks pregnant I have to relocate to Philadelphia where I will have to stay for close monitoring until our sons birth sometime in late April-early May. Once he is born, my family will be joining us until we are able to bring him home. Please pray for us as this will be a HUGE adjustment for our 5 and 1 year old. While we are away from home for such an extended period of time, we will also face many other financial challenges that come with the relocation- travel expenses, insurance, copayments, deductibles, cost of care, lodging, food and the baby’s aftercare once we make it home. Donations will help with getting our family there and back and provide our son with the best medical care that is available to him.
Thank you for taking the time to read and for your continued prayers and support. It means the world to our family.
The Milburn’s (Bryan, Sharelle, Kynleigh and Hudson)
The first week after the diagnosis was extremely rough, but after receiving the news, we were determined to do some research on the condition and reach out to other parents who have been in our shoes. After joining the global support group for CDH on Facebook, we became more hopeful with our sons diagnosis and knew it wasn’t a death sentence because there was hope! CDH comes with a national survival rate of about 40-50% but every case is different and survival percentage is based on being more severe or less severe.
After finding others who have experienced this condition with their own little loved ones and confiding in them through the CDH support group on Facebook, we have gained a lot of insight and knowledge on this condition and are much more confident that with choosing the right hospital and specialty team for our little super hero, he will stand a chance and pull through.
With many recommendations through the Facebook support group and hearing success story after success story, we called and scheduled our appointment for a second opinion with Children’s Hospital of Philadelphia. At our appointment on January 8, 2019, I went through several lengthy tests and scans so that our baby was thoroughly looked at. After being there for 8 hours of testing, we finally met with Dr. Johnson who went over our results and percentages with us. Bryan and I sat there for 30 minutes with our stomach in knots while Dr. Johnson drew out diagram after diagram of a normal babies anatomy vs. a baby with CDH. We were impatient while waiting to hear how severe our sons defect was.
Dr. Johnson finally began to explain our sons condition and the findings from our mri, 3 hour anatomy scan and echocardiogram. He told us the total lung volume from the mri showed good numbers for the baby’s gestational age and also showed that the baby did in fact have lung function on both sides which doesn’t always happen with a lot of CDH babies. The mri/ultrasound also confirmed that our baby’s liver was down with just the tip of it up which also changed things a little. The liver actually has a lot to do with the severity of these cases and if it is up, the outcomes and survival rates are different. Then came the news about our sons heart. MFM locally where we live told us the baby also had an undetermined heart defect along with CDH, and only one kidney that they found to be “echogenic”. Dr. Johnson reassured us that what we were dealing with was isolated CDH. Our baby had a perfectly healthy heart which was just misplaced due to the CDH and had two working kidneys. Bryan and I felt such a sigh of relief after hearing those words.
After meeting with Dr. Johnson, we met with Dr. Adzick who is the head surgeon of their CDH program at CHOP. He is the surgeon who will be caring for our son as soon as he is born and for the many weeks and months after. Dr. Adzick did not give us unrealistic expectations, however, his truth gives our son a much more fighting chance at not only surviving but surviving and living a normal life. Dr. Adzick told us our son is one of the better cases of this they have seen and gave him about an 85-90% chance so here begins our journey with CHOP.
On April 1, 2019 when I am 34 weeks pregnant I have to relocate to Philadelphia where I will have to stay for close monitoring until our sons birth sometime in late April-early May. Once he is born, my family will be joining us until we are able to bring him home. Please pray for us as this will be a HUGE adjustment for our 5 and 1 year old. While we are away from home for such an extended period of time, we will also face many other financial challenges that come with the relocation- travel expenses, insurance, copayments, deductibles, cost of care, lodging, food and the baby’s aftercare once we make it home. Donations will help with getting our family there and back and provide our son with the best medical care that is available to him.
Thank you for taking the time to read and for your continued prayers and support. It means the world to our family.
The Milburn’s (Bryan, Sharelle, Kynleigh and Hudson)