Wednesday, May 21, 2014

Baby Bryan #3 Update

We have shared our news with only family and very close friends so far, and we have already explained everything one million times.  It's a lot of information, so starting a blog seemed like a more efficient means of communicating!

At the anatomy scan ultrasound at my twenty week appointment on May 13th, the sonographer noticed that the right side of our baby's heart was atypically smaller than the left.  My regular OB, Dr. Newton, came in and explained briefly what she could tell us based on the ultrasound pictures, and then referred us to a perinatologist in Dallas.  Dr. Newton told us all other growth in the baby was normal for his/her gestational age, and the baby's heart rate has been good throughout the pregnancy.  We saw the same perinatologist, Dr. Rinehart at North Texas Perinatology Associates at Dallas Presbyterian, that we saw in 2010 when the sonographer found choroid plexus cysts (CPCs) in Emory's brain at the anatomy scan ultrasound.  Emory's CPCs were gone by the second time we visited Dr. Rinehart, and that's the last we saw of him.  Stephen and I prayed about our upcoming appointment, and I felt at peace about it, knowing that worrying about what we might find out wouldn't change the results.  Dr. Rinehart confirmed what Dr. Newton saw, and he briefly explained that our baby has several congenital heart defects, and then refered us to a fetal cardiologist, Dr. Kao at Medical City in Dallas.  By this point, I was feeling very anxious and worried since Dr. Rinehart wasn't able to explain the details of the defects, and we just knew that it was bad.  I had a simple blood test called Mother 21 to test for genetic anomalies (which came back normal, praise the Lord!).  The nurse who drew my blood told me her son is three, has the same condition as our baby, and he just had his second surgery and is doing well.  I am so thankful for that woman!  I know it was the Lord who put her there that day to encourage me.

We then drove to Medical City (literally two exits down the road from Dallas Presbyterian) to meet with Dr. Kao.  A sonographer took over 100 pictures of the baby's heart!  Every part he measured was in millimeters and centimeters--it's so tiny right now.  After the ultrasound, we met with Dr. Kao for a long time.  She was so thorough and easy to understand.  She had a diagram to explain the functions of all the parts of a normal heart and another diagram to show what our baby's heart looks like and how it is functioning.  Here's a picture of a normal heart:
Unoxygenated blood is pumped into the heart through the right side, into the right atrium (RA), then through the tricuspid valve into the right ventricle (RV) and then out of the heart through the pulmonary artery to the lungs to get oxygen.  Our baby has tricuspid valve atresia, which essentially means the tricuspid valve didn't form normally, so blood cannot flow from the RA to the RV.  The tricuspid valve acts as a gate, allowing blood to flow from the RA to the RV, but not return to the RA--normal blood flow is in one direction.  The baby also has a ventricular septal defect (VSD), more commonly referred to as a hole in the heart.  The VSD is a hole in the septum, the tissue that forms a wall between the two lower chambers (the ventricles) of the heart.  This is actually a good thing in our baby because it allows the unoxygenated blood to flow from the right side of the heart to the left side, which is pumped out to the lungs to be oxygenated.  Without the VSD, there would be no way for unoxygenated blood to flow to the pulmonary valve, and then to the lungs for oxygenation.  Currently, the VSD is neither too small (which would result in not enough blood flow) nor too large (which would result in too much blood flow).

Our baby's RV is small because the tricuspid valve atresia restricted blood flow to the RV--this condition is called hypoplastic right heart.  Hypoplasia means the underdevelopment of an organ, so essentially our baby's heart is lacking a RV since it doesn't function like a normal heart does.  The tricuspid valve acts as a gate, allowing unoxygenated blood to flow to the RV and then to the pulmonary valve, which then sends the blood to the lungs for oxygenation.  The tricuspid valve opens and closes, keeping the unoxygenated blood from returning to the right side of the heart.  Since our baby doesn't have a functioning tricuspid valve, and is using the VSD instead to allow blood to flow from the right to left side, there is no "gate system" to keep oxygenated blood from mixing with unoxygenated blood.  This results in lower oxygen saturation throughout the body.  People with normally functioning hearts have an oxygen saturation of 93-100%, and before surgery, our baby's will be in the high 80% range.  Basically the blood oxygenation will be a more diluted solution than normal.

I  will for sure deliver in Dallas.  Around 30 weeks, my regular OB will transfer to an OB in Dallas.  Dr. Rinehart said doctors in Tyler simply won't feel comfortable with me delivering in Tyler, and that's fine with us.  As long as everything in our baby's heart continues to grow according to our "new normal," the baby won't require surgery immediately after birth.  The defects haven't affected any other part of the baby--all other growth is normal according to gestational age (also praise the Lord!).  The baby is getting adequately oxygenated blood via the placenta right now, so there is no need to deliver early. The defects won't affect the baby until he/she is required to breathe on his/her own after birth.

There is no known reason for why our baby's heart formed this way.  Some time around the 8th week of pregnancy our baby's heart formed abnormally.  Dr. Kao assured me there was nothing I could have done or not done differently to prevent this.  Dr. Rinehart and Dr. Kao were both so patient and reassuring.  Dr. Kao explained that the baby will require two surgeries for sure--one at around 3-6 months of age and another at three years old.  The first surgery will be to place the Glenn shunt, which will reroute blood flow so oxygen saturation will be closer to normal.  The baby's oxygen saturation will be monitored after birth to determine when exactly the Glenn shunt operation will be performed.  The second surgery will be to place the Fontan shunt, again to reroute blood flow.  The prognosis is very good--Dr. Kao said we can expect our baby to live an almost completely normal life. He/she probably won't be able to play team sports because he/she won't be able to physically keep up with peers, but tennis or golf would be fine. The Fontan procedure wasn't developed until the 80's, so there aren't old people living with this condition yet just because the shunt has been around that long. 

Stephen and I are both so thankful that we live in a time when there is medical treatment available to correct our baby's heart function.  We have prayed for peace about our situation, clear answers from doctors, and an otherwise normal pregnancy, and the Lord has definitely been faithful!  We're scheduled to go back to Dallas on June 16th, which is our seventh anniversary.  We'll meet with Dr. Rinehart and Dr. Kao again, and meet with the surgeon, Dr. Mendeloff for the first time.  

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