Baby Markey CDH fight
Donation protected
On Aug 21. 2017, (34 weeks pregnant) we had a specialist appointment schedule due to having extra fluid. We were given devastating news, our baby has a life threatening birth defect called Congenital Diaphragmatic Hernia (CDH). It all felt like a very cruel and awful nightmare. Our perfect pregnancy was no more our reality, but we chose to not give up.
Lincoln Alex-Scott Markey was born on September 13, 2017 at Mott’s Children’s Hospital in Ann Arbor Michigan. At birth he was diagnosed with Pulmonary Hypertension giving us a 10% survival rate. At four hours old he was placed on a heart lung machine called ECMO.
Lincoln had his repair surgery when he was 24 hours old. While on ECMO he developed three small brain bleeds. He spent 21 days on this life saving machine and was extabated when he was 41 days old. We spent 71 days in the NICU.
Since being home we have decided that I would be his full time caregiver because the risk of him getting sick at a daycare is to big. Little Lincoln’s medical bills have started to pile up since our primary insurance will only cover $200,000 or his 1.3 Million dollar hospital bill.
Alex and I have decided to file for chapter 7 bankruptcy due to the added medical bills and our everyday living expenses.
Reaching out and asking for assistance is not an easy thing to do, but then again, neither is our situation. Your donations will be used to help afford the cost of medical bills, travel to and from hospital/appts., Please know that ANY donation helps and that no amount is too small… every penny counts. In addition, any and all prayers and positive thoughts directed to this family are very much appreciated.
Thank you for taking the time to read about baby Markey's fight and thank you for helping us in any way you can - we are eternally grateful.
- Markey family
WHAT IS CDH?
The fact is, roughly 50% of babies born with CDH do not survive. Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems. A few of the survivors suffer from severe long-term medical issues. CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.
Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth and often times affects the heart growth.
When the abdominal organs are in the chest, there is limited room for the lungs to grow. This prevents the lungs from developing normally, resulting in pulmonary hypoplasia (or underdeveloped lungs). This can cause reduced blood flow to the lungs and pulmonary hypertension (high blood pressure in the pulmonary circulation), as well as asthma, gastrointestinal reflux, feeding disorders and developmental delays.
CARE FOR THE BABY
At the time of delivery, the NICU and Surgical Team — including neonatologists, neonatal and surgical fellows, neonatal surgical nurses, and Respiratory Therapists (to name a few) will all be waiting to stabilize and provide specialized ventilation assistance before bringing him to the NICU for further care.
At stabilization, a breathing tube is inserted into his airway so a ventilator can be attached to help with breathing. A tube going from the mouth or nose to the stomach will be placed to keep air from getting into the stomach and intestines causing less space for the lungs to expand. Intravenous and arterial lines will be placed in blood vessels in his arms, legs or belly button for administration of fluids and medications. Blood gases will be drawn from the arterial line to assess how well the baby is oxygenating.
Surgical repair of CDH depends on the baby’s progress in the days following birth, and can occur as early as 24-72 hours after birth. It is typical to let the baby stabilize and become comfortable on the ventilator before surgery is attempted. An incision will be made just below the rib cage, the organs in the chest are guided back down into the baby's abdomen and the hole in the diaphragm is sewn closed using existing muscle tissue, or a Goretex patch. The space created in the chest allows the lungs to continue to grow; his lungs will continue to grow and develop more air sacs or alveoli all the way through the baby early childhood.
Lincoln Alex-Scott Markey was born on September 13, 2017 at Mott’s Children’s Hospital in Ann Arbor Michigan. At birth he was diagnosed with Pulmonary Hypertension giving us a 10% survival rate. At four hours old he was placed on a heart lung machine called ECMO.
Lincoln had his repair surgery when he was 24 hours old. While on ECMO he developed three small brain bleeds. He spent 21 days on this life saving machine and was extabated when he was 41 days old. We spent 71 days in the NICU.
Since being home we have decided that I would be his full time caregiver because the risk of him getting sick at a daycare is to big. Little Lincoln’s medical bills have started to pile up since our primary insurance will only cover $200,000 or his 1.3 Million dollar hospital bill.
Alex and I have decided to file for chapter 7 bankruptcy due to the added medical bills and our everyday living expenses.
Reaching out and asking for assistance is not an easy thing to do, but then again, neither is our situation. Your donations will be used to help afford the cost of medical bills, travel to and from hospital/appts., Please know that ANY donation helps and that no amount is too small… every penny counts. In addition, any and all prayers and positive thoughts directed to this family are very much appreciated.
Thank you for taking the time to read about baby Markey's fight and thank you for helping us in any way you can - we are eternally grateful.
- Markey family
WHAT IS CDH?
The fact is, roughly 50% of babies born with CDH do not survive. Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems. A few of the survivors suffer from severe long-term medical issues. CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.
Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth and often times affects the heart growth.
When the abdominal organs are in the chest, there is limited room for the lungs to grow. This prevents the lungs from developing normally, resulting in pulmonary hypoplasia (or underdeveloped lungs). This can cause reduced blood flow to the lungs and pulmonary hypertension (high blood pressure in the pulmonary circulation), as well as asthma, gastrointestinal reflux, feeding disorders and developmental delays.
CARE FOR THE BABY
At the time of delivery, the NICU and Surgical Team — including neonatologists, neonatal and surgical fellows, neonatal surgical nurses, and Respiratory Therapists (to name a few) will all be waiting to stabilize and provide specialized ventilation assistance before bringing him to the NICU for further care.
At stabilization, a breathing tube is inserted into his airway so a ventilator can be attached to help with breathing. A tube going from the mouth or nose to the stomach will be placed to keep air from getting into the stomach and intestines causing less space for the lungs to expand. Intravenous and arterial lines will be placed in blood vessels in his arms, legs or belly button for administration of fluids and medications. Blood gases will be drawn from the arterial line to assess how well the baby is oxygenating.
Surgical repair of CDH depends on the baby’s progress in the days following birth, and can occur as early as 24-72 hours after birth. It is typical to let the baby stabilize and become comfortable on the ventilator before surgery is attempted. An incision will be made just below the rib cage, the organs in the chest are guided back down into the baby's abdomen and the hole in the diaphragm is sewn closed using existing muscle tissue, or a Goretex patch. The space created in the chest allows the lungs to continue to grow; his lungs will continue to grow and develop more air sacs or alveoli all the way through the baby early childhood.
Organizer
Nicole Markey
Organizer
East Tawas, MI
