The story of how we learned about Congenital Diaphragmatic Hernia from our son Jeremy.
Jeremy @ 20 weeks
At 20 weeks we found out about CDH on April 19 2011
Thursday, May 26, 2011
I have been having a feeling I want to share my unborn son's story of Congenital Diaphragmatic Hernia! I have looked at other blogs and I just want more people to be aware of this birth defect. I am currently 25 weeks pregnant with my second child, who we are going to name Jeremy (which means GOD WILL UPLIFT). My son has the Bochdalek. Jeremy's case is very severe the doctors give him a 20-30% of survival, his heart is pushed to the right side of his body and his stomach is below the heart, the liver and intestines are in the cavity. The opening of the hernia is very big. Which they can do surgery when he is born. The main concern is that the lungs won't form because of all the other organs in the chest cavity taking up the space needed for the lungs. At 20 weeks his lung to head ratio was .67 which isn't good.
Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the US each year). The cause of CDH is not yet known. 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 conditions.
So a little about this birth defect what happens is in the 8 to 10 week the diaphragm is formed with these babies there is a hole or not much of the diaphragm. Which then causes other organs to go in the chest cavity like the stomach, liver, intestines, and it pushes the heart on the wrong side. There are 2 different kinds of this hernia Bochdalek, Morgagni.
Bochdalek hernia - A Bochdalek hernia involves an opening on the left side of the diaphragm. The stomach and intestines usually move up into the chest cavity.
Morgagni hernia - A Morgagni hernia involves an opening on the right side of the diaphragm. The liver and intestines usually move up into the chest cavity.
Neonatal intensive care - A diaphragmatic hernia is a life-threatening illness and requires care in a neonatal intensive care unit (NICU). Babies with diaphragmatic hernia are often unable to breathe effectively on their own because their lungs are underdeveloped. Most babies will need to be placed on a breathing machine called a mechanical ventilator to help their breathing.
ECMO - Some infants may need to be placed on a temporary heart/lung bypass machine called ECMO if they have severe problems. ECMO does the job that the heart and lungs would be doing: putting oxygen in the bloodstream and pumping blood to the body. ECMO may be used temporarily while a baby's condition stabilizes and improves.
Surgery - When the baby's condition has improved, the diaphragmatic hernia will be repaired with an operation. The stomach, intestine and other abdominal organs are moved from the chest cavity back to the abdominal cavity. The hole in the diaphragm is repaired.
Betamethosone Steroids - Steroid treatments that encourage lung growth. Given to mothers while pregnant, these steroids are commonly given to those who are expected to go into preterm labor and deliver babies with small lungs.
Tracheal Occlusion - A procedure during which a plug (or gel) is placed into the baby's trachea while he/she is still in utero. The pressure forces the lungs to expand. Those who use a plug must have a second surgery before birth to remove the plug from the trachea.
Perflubron Induced Lung Growth - Filling the lungs with Perflubron (a special liquid) and placing this liquid under constant pressure to stimulate the lungs to grow.
* information from a few different medical websites* www.cdhsupport.org & http://www.chw.org