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Parker Reese
Jessica & Ashley Singletary
This foundation was created January 1, 2008 in memory of our daughter, Parker Reese.
She was born with a rare birth defect known as congenital diaphragmatic hernia or CDH.
Our mission has always been to help other families like our own through their journey with CDH.
The foundation was created in Parkers name but it represents all children and families of CDH. If there is anything our foundation can assist you with please contact us at
jessica_theparkerreesefoundation.com
CDH
What is CDH?
Congenital Diaphragmatic Hernia / CDH is a defect in the diaphragm of the fetus. The diaphragm is the muscle and tissue that separates the chest and abdominal cavities.
In Congenital Diaphragmatic Hernia, abdominal organs push into the chest cavity through the defect (or herniate), compressing the developing lungs. This results in severe pulmonary hypoplasia (arrested development of the lungs), causing the lungs to remain small and underdeveloped.
What Causes Congenital Diaphragmatic Hernia?
The cause of Congenital Diaphragmatic Hernia is thought to be failure of the diaphragm to develop at nine to 10 weeks of gestation. When closure does not occur, the intestinal organs may herniate into the chest cavity through the defect in the diaphragm. What causes the failure of the diaphragm to close is unknown.
What is the Incidence of Congenital Diaphragmatic Hernia?
The incidence of Congenital Diaphragmatic Hernia is estimated at one in 2,200 births. Survival rate depends, in large part, on the delivery at or the immediate transfer to a tertiary-care hospital where the newborn can be treated promptly by a staff skilled in Congenital Diaphragmatic Hernia care.
How is Congenital Diaphragmatic Hernia Diagnosed?
An ultrasound can detect characteristics of Congenital Diaphragmatic Hernia. Physicians, performing ultrasound, closely examine the entire chest and abdominal area to look for what can be very subtle signs of Congenital Diaphragmatic Hernia. This diagnosis can also be aided by fetal MRI.
ECMO
ECMO (Extracorporeal Membrane Oxygenation) uses a heart-lung machine similar to the one used in open-heart surgery. There are two types of ECMO: Venoarterial (VA); ECMO uses an artery and a vein, venovenous (VV)
ECMO uses one or two veins. The doctor decides which type your child needs. When a child goes on ECMO, the following things happen:
Before ECMO can begin, a pediatric surgeon places tubes, or cannulas, into large veins and/or arteries located on the right side of the neck or in the groin. Your child will be given medications to prevent pain and movement during the surgery. The surgery will happen in the Intensive Care Unit.
The number of tubes used depends on the type of ECMO your child needs. These vessels are called the internal jugular vein, the carotid artery, the femoral vein and the cephalad vein. Your child may have one special cannula placed into the internal jugular vein, depending on how big your child is. This cannula will do the job of the two cannulas.
The ECMO machine is made up of several parts: a pump, an artificial lung, a blood warmer and an arterial filter. The ECMO machine takes the blue blood (without oxygen) out of the right side of the heart and pumps it through the artificial lung (oxygenator). The blood is now red blood (with oxygen). This blood is warmed and filtered before returning to the child.
The ECMO machine does the work for your childs lungs and/or heart and allows them time to heal. During the time your child is on ECMO, he is still connected to the ventilator. The ventilator is used to keep the lungs from collapsing while they get better.
At the beginning of the procedure, the ECMO machine does most of the work for the childs heart and lungs. Even though your child looks much better, it is important to remember that the ECMO machine is doing the work the lungs cant do.
To see if your child is getting better, a small amount of blood is drawn from the arterial line. This test (a blood gas) checks to see how much oxygen is present in the blood. As your childs lungs begin to heal, the oxygen level in the blood improves. This allows us to turn down the ECMO machine slowly, to wean your child off ECMO. The machine is turned down until it is doing only a small portion of the work.
At this time we may try to take your child off ECMO and measure the level of oxygen and carbon dioxide in the blood to see if the lungs are ready to work.
While your child is on ECMO he receives a medicine called heparin. Heparin keeps your childs blood from clotting in the ECMO circuit. Heparin may cause your child to bleed while on ECMO. Special blood tests, (ACTs) are done every hour to check how fast the blood is clotting. When your child is taken off ECMO the heparin is stopped, and the time it takes your childs blood to clot will return to normal in a few hours.
Babies are on ECMO for an average of five days. Older children and some infants may be on ECMO for weeks. The doctor and team determine how long it should take for your child to get better, but the time needed to recover is not always known.
Parker's House
Parkers House was started on May 6, 2008 for families delivering a baby with congenital diaphragmatic hernia (CDH) or coming back for follow up appointments and/or surgeries at Duke University Medical Center or UNC Chapel Hill.
You can stay overnight or you can stay for months. Parkers House is designed to suit the needs of the families it serves. This house was donated by some dear friends of ours, Rob and JoAnna Maguire. It is a 3 bedroom, 2 bath home with office and a full basement.
It is located on a dairy farm in Hillsborough, North Carolina only 15 minutes from either hospital and several shopping centers and restaurants. It is minutes from Maple View Dairy Farm and Ice Cream Shop.
This house will mean so many things for families facing CDH.
It will be a home away from home for them. A place where they and their extended families can stay with absolutely no worries. This house is free of charge to families and offers many amenities including but not limited to; cable television, wireless internet and play center for children.
It is a pet friendly house and has several outdoor kennels.
If you would like more information or would like to be put on the waiting list please email: jessica_theparkerreesefoundation.com
Donations
Donations of all sizes are accepted and appreciated and a receipt will be provided for your tax records.
Many businesses will match their employees contributions to nonprofit organizations. Please contact your company and find out if your company will match your contribution to The Parker Reese Foundation.
FOUNDATIONS
The Parker Reese Foundation is grateful to the many foundations that support our activities and mission. Those that are interested in learning more about The Parker Reese Foundation should contact us via e-mail at: donations_theparkerreesefoundation.com or call Jessica Singletary at (888) PRF-CDH0.
MEMORIAL CONTRIBUTIONS
If you would like to make a contribution in memory or in honor of a family member or friend please contact Jessica Singletary. All contributions will be acknowledged.
OTHER DONATIONS
There are many other donations that can make a significant difference to The Parker Reese Foundation. Consider donating a wide variety of services including but not limited to; advertising, printing, photography and marketing.
E-mail us at: donations_theparkerreesefoundation.com or call us at (888) PRF-CDH0 for more information.
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