Baby Schu2: Introduction to Tetralogy of Fallot

August 7, 2014

As some of you know, we found out a couple weeks ago that baby girl Schuster - due November 21st - has a congenital heart defect called Tetralogy of Fallot. This condition consists of two major defects: (1) she has a hole in the septum between the heart's two lower chambers, the ventricles, which is known as a VSD, and (2) she has a narrowing of the pulmonary valve, meaning that not enough blood reaches the lungs, this is known as pulmonary stenosis. The baby is completely unaffected by this defect while in utero. The survival rate into adulthood is extremely high. Because they detected this before birth, the doctors at Lurie Children's Hospital Heart Center are very confident that with the right surgeries and treatment, she will lead a normal life. Olympic snowboarder Shaun White has TOF and he won Olympic gold medals!

 

We saw a pediatric cardiologist from Lurie Children's Hospital Heart Center who performed an echocardiogram on July 22 and diagnosed her with TOF. The cardiologist told us that 15 - 20% of kids with TOF also have a genetic or chromosomal abnormality, (such as 22q11 micro deletion syndrome, Down's and DiGeorge syndromes), so we opted to get a amniocentesis to rule those out. All the results are back and no genetic or chromosomal abnormalities were found.

 

Both our OB and the cardiologist said that the TOF won't effect the delivery of the baby, but this is something that we will continue to discuss with our doctors as we approach the due date. The baby will be taken to the Cardiac Care Unit at the children's hospital as soon as she is born. She most likely will need to have a shunt put in shortly after birth and will be in the hospital for a couple weeks. Once she's stable, she'll come home and we'll continue to work closely with the doctors to prepare for the open heart surgery she will need to repair the VSD and pulmonary stenosis. This will most likely occur between six and nine months.

 

It's going to be a rough first year, but we feel confident that she will be a strong, healthy and happy kid, who in about 18 years will win Olympic gold in women's curling. 

 

*Originally posted to our family blog.

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