Charles Miller writes about what it was like for the family when their first daughter was born with multiple CHD’s
Our world changed forever on February 14, 1991. That is the day that we were told that our unborn daughter (our first child) had a serious, complex congenital heart defect. Our regular obstetrician told us he wasn’t getting a good view of the heart and he wanted us to go to Riley Hospital for Children for a stronger echocardiogram. Thankfully we only lived about 20 minutes from this wonderful hospital in Indianapolis.
At that appointment they told us they believed that our child would be born with a Single Ventricle, Pulmonary Stenosis, and Transposition of the Great Arteries. These now familiar terms were totally foreign to us back in 1991. This was long before Google so we resorted to the medical library at Indiana University to do some research. How much easier it is today to connect with health information and parents with similar stories!
Alexandra Marie Miller was born on April 30, 1991 and her initial diagnosis was confirmed. She spent one week in ICU and was discharged to scared new parents! One of our funny memories is realizing after we got her home that we had the new car seat’s lumbar support upside down and her head was shoved forward into an awkward position. She was taking digoxin from a very small oral syringe and we also mixed baby aspirin with water and gave that to her in a small oral syringe also.
We were told to come back to the hospital when she started to turn cyanotic — or blue. About 4 months later she started turning blue and she was admitted to the hospital and had her first cardiac surgery – a Balock-Taussig shunt. We then were told that when she was big enough they would perform the Fontan surgery. This surgery happened when Alex was 3 years old and her baby brother was 6 weeks old! (She also has another baby brother — neither have any cardiac issues).
Alex came through this second surgery well. Obviously scary times but we have always had a very positive attitude about her condition, her life, and her medical team. She continued to have an uneventful life with the usual cardiac checkups and multiple medicines. We did all we could to give her a very normal life while taking extra precautions to limit her exposure to illnesses. She even played recreational soccer for a few years!
When she turned 13 things started to change. In a 5 year period, she has had 8 additional cardiac surgeries all centered around the fact that she acquired arrhythmias. This is not uncommon among those with her unique cardiac anatomy. They tried to fix the problem with multiple ablations. During the third ablation she went into 3rd degree (or Total) heart block. They set up an external pacemaker during that ablation and kept her sedated until the next day when a pacemaker could be installed.
They had a lot of trouble getting various leads in the pacemaker to work and some of the leads have broken…so there have been many surgeries involving these arrhythmias and the pacemaker. There have also been many hospitalizations that did not result in a surgery…..she has been admitted to the hospital more times than we can count!
We take all these hospitalizations in stride and try to make them as fun as possible. Alex’s two younger brothers like to visit and climb on the bed and run the controls to put the bed in strange positions.
Alex is now a freshman in college. She has had to come home once for a few days of testing because she has been experiencing dizziness and shortness of breath. One of the biggest issues of having an older child with CHD is that (at least in our case) they are best treated at the hospital where they grew up which in our case was a wonderful children’s hospital with a great cardiac unit. The adult cardiologists in the town where she is going to college really wouldn’t know what to do with her.
Alex played the synthesizer in the marching band throughout high school. She has travelled to Mexico several times on mission trips with her family. She has been to Honduras twice on mission trips…once living there for 2 months in a remote area with her family. As I said, we try not to let CHD limit her ability to lead a “normal” life. Her major in college is Spanish and she hopes to continue to travel internationally.
Her heart is not “fixed” and never will be fixed. It has been repaired to the best state in which it can function. We are not sure what the next step is…so we keep on raising awareness of this disease and hope that more research is done so these kids can continue to lead long, productive lives.
Wrote by Charles F Miller
You can contact Charles F Miller via Twitter on http://twitter.com/charlesfmiller2