It’s been awhile since I updated on Becky’s medical condition.
The Cliff Notes summary: she is doing well despite developing a thyroid condition, grows bigger every day, and is about a month out from her heart surgery. The War and Peace version is longer.
It’s challenging to know where to start. Her most serious medical issue is a heart defect. Her upcoming heart surgery is like her Super Bowl. I call it the Becky Bowl and it’s the big game in town. Everything is focused on getting her to that surgery as healthy and big as possible. Bottom line, the surgeons want a fat, healthy baby on January 14. Kind of like an NFL team wants their offensive linemen on game day.
Dr. R. is Becky’s cardiologist whom I first met in the NICU. He has a wonderful bedside manner and an optimistic pessimism about Becky’s condition. He reminds me of my cousin who is a renowned nephrologist. There is something familiar in Dr. R’s manner that makes him feel like family. I have learned from the surgeons that Dr. R. is the most experienced echocardiographer at the hospital. So I have confidence that we are taking the right surgical path with Becky.
He is also funny, which helps me deal with the seriousness of Becky’s situation. For example, Dr. R. particularly enjoys Becky’s hair. Since the first time he met her, he has played with her hair. He says it reminds him of the Dr. Seuss character Thing 1. In fact, he has nicknamed her Becky 1. We’ve tried to comb her hair down but it has a mind of its own. It’s part of what makes Becky, well, Becky. At every appointment, we have a good laugh about it.
When I saw Dr. R. after Becky’s discharge, he was surprised to see her doing so well. He told me then that he hadn’t expected her to look so good based on her condition in the NICU. While she continues to grow and maintain good color, we are now about a month away from cardiac surgery. Becky will have a procedure to correct the holes in her heart.
Before she was born, Becky was diagnosed with an unbalanced AV canal. This was a serious diagnosis as it meant she would need a complete rerouting of blood flow to her heart. However, after she was born, the imaging of her heart was more precise and the cardiologists determined that her AV canal is balanced. This was a huge relief and quite possibly a miracle. She will be able to live with a 4-chamber heart.
But there are two problems with her heart: ventricular septal defect (VSD) and atrial septal defect (ASD). Last week Sam and I met with Dr. E. who will operate alongside Dr. V., whom we met last summer. Here is Dr. E.’s drawing of her heart.
And here is my best explanation of her condition. VSD means there is an abnormal connection between the two lower chambers of the heart (ventricles). ASD is an abnormal connection between the two upper chambers of the heart (atria). Basically these abnormal connections are holes in her heart. These holes increase the amount of blood that flows through the lungs. This overfills the lungs and overworks the right side of the heart. Over time, this can lead to pulmonary hypertension and damage both the heart and lung tissues.
Becky’s surgery will correct this problem. On January 14, Dr. V. and Dr E. will work together to place a Gortex patch and create the proper connection between the upper and lower chambers of her heart. This will allow the right and left sides of her heart to communicate properly. During the 3-4 hour operation, the surgeons will make a midline incision and separate the chest bone to reach her heart. All of the work will be done through her right atrium.
For approximately 1½ hours, Becky will be put on a heart-lung, or bypass machine. The surgeons have to arrest her heart in order to make the repairs. While Dr. E anticipates only repairing these holes, sometimes they find problems with the valves, particularly the mitral and aortic valves. Occurring 10% of the time, this would necessitate additional surgeries in the future. However, Dr. E. said that babies with Down syndrome usually have normal valve anatomy. Hopefully this is the case for Becky.
The surgeons will place leads for a temporary pacemaker. Sometimes a baby requires a permanent pacemaker. This will become apparent within 2 weeks of her surgery. So there is a possibility that she will need a permanent pacemaker which would require another surgery before she could go home. This happens in about 2% of similar cases.
Complications after surgery include bleeding and infection. Becky will most likely need 3 units of blood during and after her surgery. Sam and a couple of the kids hope to donate blood in the coming weeks to prepare for her surgery. Becky will be given antibiotics before, during, and after her surgery. The close proximity of her G-tube to the surgical incision indicates a stronger course of antibiotics.
The success rate for the surgery is 98% with a 2% chance of mortality. I hate to think of the 2%. But, I gathered my courage, and asked pointed questions about the unthinkable. Dr. E said they perform about 20-30 of these operations per year. He can’t remember the last time a child didn’t survive the operation. He said it has been at least 5 years since they had such a tragedy.
Becky has also developed a thyroid condition. Once again, it was providential that this condition was discovered at this point. Becky passed her newborn screening test in the NICU. Normally, that test result is sufficient and the thyroid function isn’t tested again until 6 months or 1 year of age. But Dr. R. wanted to be extra cautious and had his nurse order a blood serum exam. When this returned an abnormal result, I had to take her back to the hospital for several follow-up blood tests.
My pediatrician followed these results closely, eventually passing us back to the pediatric endocrinologist when her TSH and free T4 levels became critical. She is on a daily medication to correct the problem. According to my pediatrician, children with Down syndrome eventually develop thyroid issues. However, it is uncommon to have this happen so early in life. Becky will be on daily medication for the rest of her life. It saddens me to think that something on her tiny body is broken beyond repair. But I am profoundly grateful that this problem was discovered and that there are medications to help her.
Becky continues to feed exclusively through her G-tube. This amazing little invention allows us to plug her feeds directly into her stomach. When this G-tube was first placed during her abdominal surgery, I have to admit, it really freaked me out. I told Becky’s NICU primary nurses (Auntie Trudy and Auntie Em) that this was Frankenstein medicine and it made me uncomfortable. Let me tell you, it has been an absolute God-send. We are able to feed her around the clock with little fuss.
She is sensitive to her feeds, so we have to keep her very still during and after each session. But she is putting on weight beautifully which is vitally necessary for a good surgical outcome. The surgeons would like her to weigh 11-12 pounds for the January 14 Becky Bowl. She weighed 11 pounds 1 ounce last week. I can’t describe my elation each time the scale inches higher.
Becky is a precious little baby, very calm and peaceful. It helps to have an army of children itching to hold her and help. She is almost never alone in her crib. Rudy, our beloved rescue dog, gently watches over her and enjoys having another sleeping companion.
If I stop to think about what Becky is getting ready to go through, I fill with tears and have to catch my breath. But I can’t spend time rocking myself in a corner, paralyzed by fear. As always, Becky is in the hands of God as well as the best possible medical hands. I trust their training, their judgment, and their goodwill. What else can I possibly do?
We are thrilled to have Becky with us for the Christmas and New Year holidays. There is nothing quite like having an infant in the house at this time of year. As we turn the calendar to 2021, we will begin preparing for the logistics surrounding Becky’s surgery. Sam will stay with the Rowdy 7 at home and my mother hopes to join me at the hospital and Ronald McDonald House. We await clarification on Covid rules and hospital regulations to finalize our plans.
As we hunker down for a few more weeks, we pray for continued weight gain and focus on the 98% surgical success rate. But we do recognize that, according to Dr. R, Becky’s heart surgery will not fix one problem.