Helping Landon on his CDH journey
Donation protected
On Feb 25th we expected a joyful ultrasound appointment with counting fingers and toes and getting every reassurance that our baby was growing and looking just fine, instead it became the day everything changed. We were given devastating news, our baby boy has a life threatening birth defect called Congenital Diaphragmatic Hernia (CDH). The words "abort" and "terminate" were recommended to us. 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.
McMaster Children’s Hospital has become the tertiary care centre for mom and baby, which requires weekly visits with their high risk team undergoing various medical tests; echocardiographs, ultrasounds, amniocentesis, various blood tests, and possibly an MRI shortly. They have been outstanding in their care of the baby. They are tracking his growth, and we hope to keep in in utero as long as possible. Pending him continuing to grow in utero, at the 38 week mark an induction will take place.
Survival rates depend on the types and number of organs involved in the hernia and the amount of lung tissue available (best estimated by the LHR). There are many surgical procedures and complications that may or may not occur. The baby has been given a 50% chance of survival. His stomach and bowels are in the chest cavity. The doctors have given us a slightly favourable Lung to Heart Ratio (LHR) of 1.5. The heart has been shifted to the right side, which has resulted in an artery being pinched. After birth the baby will undergo further tests to see if the artery has been damaged. If this is the case they will be transferred to Sick Kids for further heart surgery.
In addition to surgical repair, the baby will require specialized equipment such as the ventilator immediately at birth, heart lung machine (ECMO), and/or nitric oxide. Because of this, it is important that he is delivered in a hospital with immediate access to this equipment. They have been told to expect a lengthy time in the NICU, as many hurdles are expected to come up before and after surgery.
With all the unknowns associated with CDH and this endeavor, the family needs help. When the baby arrives, the family will be separated and financial strain will occur. Reaching out and asking for assistance is never an easy thing, but then again, neither is their situation. Your donations will be used to help afford the cost of travel, parking, housing while at McMaster, care for the girls, and all the other bills that incur while the family spends precious time preparing and being with him in the NICU. Please know that ANY donation helps and that no amount is too small… every cent counts. In addition, any and all prayers and positive thoughts directed to this family are very much appreciated.
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 he 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 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 his early childhood.
McMaster Children’s Hospital has become the tertiary care centre for mom and baby, which requires weekly visits with their high risk team undergoing various medical tests; echocardiographs, ultrasounds, amniocentesis, various blood tests, and possibly an MRI shortly. They have been outstanding in their care of the baby. They are tracking his growth, and we hope to keep in in utero as long as possible. Pending him continuing to grow in utero, at the 38 week mark an induction will take place.
Survival rates depend on the types and number of organs involved in the hernia and the amount of lung tissue available (best estimated by the LHR). There are many surgical procedures and complications that may or may not occur. The baby has been given a 50% chance of survival. His stomach and bowels are in the chest cavity. The doctors have given us a slightly favourable Lung to Heart Ratio (LHR) of 1.5. The heart has been shifted to the right side, which has resulted in an artery being pinched. After birth the baby will undergo further tests to see if the artery has been damaged. If this is the case they will be transferred to Sick Kids for further heart surgery.
In addition to surgical repair, the baby will require specialized equipment such as the ventilator immediately at birth, heart lung machine (ECMO), and/or nitric oxide. Because of this, it is important that he is delivered in a hospital with immediate access to this equipment. They have been told to expect a lengthy time in the NICU, as many hurdles are expected to come up before and after surgery.
With all the unknowns associated with CDH and this endeavor, the family needs help. When the baby arrives, the family will be separated and financial strain will occur. Reaching out and asking for assistance is never an easy thing, but then again, neither is their situation. Your donations will be used to help afford the cost of travel, parking, housing while at McMaster, care for the girls, and all the other bills that incur while the family spends precious time preparing and being with him in the NICU. Please know that ANY donation helps and that no amount is too small… every cent counts. In addition, any and all prayers and positive thoughts directed to this family are very much appreciated.
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 he 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 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 his early childhood.
Organizer
Tiffany Freer
Organizer
Kitchener, ON