Emma is our 2 year old daughter who was born on February 10th 2014. From the outside, no one who know that Emma suffers from a rare heart condition Called Hypoplastic left heart syndrome and also heterotaxy syndrome.
How did we choose her name?
The name Emma means complete/whole. And the name Faith obviously means Faith/trust. We chose this name because we knew we would need to put our complete faith and trust in God that He has a plan for our sweet girl and will take care of her.
In November of 2013, Nick and Katelyn were informed that the baby girl they were carrying had a rare birth defect.
1. Emma has a rare birth defect called Heterotaxy Syndrome.Heterotaxy syndrome involves the heart and other organs. The beginning of the word (hetero-) means “different” and the end (–taxy) means “arrangement.” There are different forms of heterotaxy. All usually involve heart defects, of varying type and severity.
More easily stated, heterotaxy is comprised of 4 defining characteristics:
Deranged abdominal organ asymmetry: stomach, spleen and liver are commonly misplaced.
Major heart defects: almost always including the absence or poor formation of major vessels.
Rotation errors: such as the heart rotated so the side normally facing the chest is facing the back.
Organ malformations: commonly the spleen is absent or deformed.
Emma's stomach is on the opposite side it should be, she has no spleen which makes it extremely hard for her to fight off infection. She is on antibiotics until the age of 5 for this. Emma's heart is more midline than it should be, and her liver is midline in her body.
Emma's intestines are also malrotated but at this point show no obstruction.
2.Emma has Complete Unbalanced AV Canal Defect. More blood is being pumped into one side of the heart causing the smaller side not to grow and mature like it should.
3. Emma has a Hypoplastic left ventricle. Hypoplastic left heart syndrome affects a number of structures on the left side of the heart that do not fully develop, for example:
The left ventricle is underdeveloped and too small making her a single ventricle heart which essentially means she has half of a heart.
The mitral valve is not formed or is very small.
The aortic valve is not formed or is very small.
The ascending portion of the aorta is underdeveloped or is too small.
4. Emma has Double Outlet Right Ventricle (DORV). In a double outlet right ventricle defect, the pulmonary artery and the aorta—the heart’s two great arteries—both arise from the right ventricle..
5. Emma has pulmonary atresia which is a congenital malformation of the pulmonary valve in which the valve orifice fails to develop. The valve is completely closed thereby obstructing the outflow of blood from the heart to the lungs.
6. At her heart cath, they discovered Emma has a narrowing of her left pulmonary veins which they will need to fix during her next surgery.
Emma will need a minimum of 3 open heart surgeries. Emma had her first surgery to place a BT shunt at 10 days old. She Had her second surgery called the Glenn at 4 months old and we are currently preparing for her third, the Fontan, In April of this year.
She is expected to have the LADDS surgery this month to correct her intestinal malrotation.
As you can imagine, we have racked up quite a bit of medical bills. And Unfortunately, there are still lots of medical expenses. We are thankful to everyone who has helped us financially and who have prayed for our family! Emma is such a special miracle and we are blessed that God chose us to be her parents.
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