It didn't seem to take very long from when we found out that Bronwyn was pregnant until problems began. In the fall of 2008, Bronwyn had a 12 week ultrasound, during which they told us that the nuchal fold was bigger than they would have liked. They told us that this put us at increased risk of having a baby with downs syndrome or a congenital heart defect and blood samples were taken for the possibility of downs syndrome. We were quite shocked by this news as we hadn't really thought about the possibilities of having anything but a healthy little baby. We were both relieved when the blood test showed that the risk of downs syndrome was small.
The next problem happened at the 18-20 week anatomy scan. I (Matt) can remember watching (Bronwyn couldn't see the screen) as the ultrasound lady repeatedly returned to look at the babies heart. She did not say a word to us until completion of the exam when she stated "I am going to get a doctor". The doctor came and told us that there appeared to be a problem with the heart and that we would need to have a echocardiogram (referred to as an echo, which is just a beefed up ultrasound as far as I can tell) to learn more. This came as quite a shock and we were whisked away to another building in the hospital to talk to a genetic counselor who began with: "are you sure you two are not related?".
The echocardiogram was performed around a week later. After completing the scan, the cardiologist took us into a room and described exactly the problem that Brea had with her heart. She described how, among other things, Brea has her heart on the other side of her chest (dextrocardia), has only one developed ventricle, in this case the right ventricle (single ventricle) and her left and right ventricles were switched position (so the aorta is attached to the right ventricle and the pulmonary artery to the left).
She also described how Brea would require three surgeries early in life (one in her first week of life, the second after 4-12 months and the final surgery after two years of age). While these surgeries could not cure the problems she has, they would give Brea the best chance of living a somewhat normal life. We were told that since these surgeries were only developed in the 1970s and 1980s they have no long term data on how life may look 20 years down the road.
It was obviously devastating news to hear and came as a complete shock, despite knowing there were complications from the ultrasound. I can remember not going into work for about a week and even then really only going through the motions for quite a while. The night of the diagnosis I can remember getting into bed and giving Bronwyn one ear of my mp3 player. We listened to one song: the newsboys singing "blessed be Your name". One of the verses has the lyrics: "Blessed be Your name; On the road marked with suffering; Though there's pain in the offering; Blessed be Your name". I think we both fell asleep that night having cried until there were no more tears left to give.
The pregnancy was quickly upgraded from a routine pregnancy to a high-risk pregnancy, complete with new OB/GYN and hospital. Bronwyn had the last visit with her initial OB/GYN on her birthday, the day after the echo. The Dr told Bronwyn that it is impossible to tell what other defects the baby may have and that we should strongly consider aborting the baby. He said the cardiologists don't tell you all the negative things because they like performing heart surgeries. It was not a birthday to remember.
Both Bronwyn and I can remember it taking several weeks before we were once again excited that we were about to have a baby. While the remainder of the pregnancy was as trouble free as a pregnancy can be, the heart problems and associated surgeries were never far from our minds.
Monday, October 10, 2011
Last week we got confirmation that Brea will have her Fontan surgery in NYC on November 15. This surgery is the third of the three-stage surgery procedure she needs. She will be having her pre-op testing done on November 10.
We are now in the process of planning our trip to New York. We will try and include a few posts over the next couple of weeks reliving the journey so far, and then update this with news once we get to New York.
|Brea at the Red River Gorge last weekend|