Coronary Concern

After Diana was born we received all kinds of advice about services and therapies for which she qualified. One is Supplemental Security Income for the Aged, Blind, and Disabled. [I will have to comment another day on how it feels to receive a reminder every month that my kid is "disabled."] We calculated that even though her monthly benefit was less than one quarter of what I was earning,  it was enough for me to leave the workforce.

I did not choose to quit my job so that we could mooch off the government. I chose to quit my (fantastic!) job and stay at home with my daughter because she has an Atrioventricular Septal Defect (AVSD). Basically instead of flowing neatly in and out of her coronary piping, blood sort of goes in and swooshes around before finding its way out. This is hard on her heart and lungs. In July, we saw a pediatric cardiologist who told us Diana would require surgery before the December. Diana's case has been seen by a board of surgeons who have determined her heart defect is mild enough to wait one year before operation. If we forgo the surgery, however, her life expectancy drops to about 6 years.

The doctors want to wait to operate on Diana for two main reasons: (1) giving her anatomy time to grow makes her parts easier for the surgeon to work on, increasing likelihood of a favorable outcome, and (2) the longer they wait to operate, the less likely repeat surgeries become. In the meantime, my job is to keep Diana well so that she can (a) wait until the optimal time for surgery, and (b) be immunologically strong so that surgery does not have to be delayed.

Before we found out about Diana's heart, the plan was for me to return to work 12 weeks postpartum. There was a school/daycare down the sidewalk from the church where I worked as an administrative assistant. I was going to pump breastmilk and give it to them to feed her. When we received her diagnosis, my husband and I decided together that the best way to achieve health and growth for Diana was for me to stay home with her.

It's weird how little I used to think about others' health before our daughter was born. It didn't matter to me when other people had colds, I would just stay away from them or load up on Vitamin C. If my sinuses acted up, I still went to work because I still had a job to do. After her birth, however, our vast world of trust closed around me. Fellow grocery store shoppers often approached us and touched my baby -- her toes, her hands, her face...never invited and never asking permission. I learned the art of strategic positioning, but I was still afraid to take her anywhere. I didn't want her to catch any germ that could complicate her heart condition.

Then we heard whispers of measles in the USA. December 2014. I felt trapped. I had friends who weren't vaccinating and I knew I would be near them and their children over the summer. Diana was well enough to follow the standard immunization schedule but her first MMR shot wouldn't happen until age 1, and she wouldn't be fully vaccinated until age 5! I wanted to quarantine. I wanted to grab my friends and shake them. We lived in the Midwest but measles didn't care about that.

We made it through the summer without contracting any eradicated diseases and Diana received her 12 month immunizations as planned. It's hard for me to be civil when it comes to this [non]issue. The science is as obvious as the fear-mongering and the hiding behind religious freedom. I love vaccines. I wish there were more. I really appreciate Amy Parker's thought on the matter expressed in her Voices for Vaccines article:

"If you think your child’s immune system is strong enough to fight off vaccine-preventable diseases, then it’s strong enough to fight off the tiny amounts of dead or weakened pathogens present in any of the vaccines. But not everyone around you is that strong, not everyone has a choice, not everyone can fight those illnesses, and not everyone can be vaccinated. If you have a healthy child, then your healthy child can cope with vaccines and can care about those unhealthy children who can’t. Teach your child compassion, and teach your child a sense of responsibility for those around them. Don’t teach your child to be self serving and scared of the world in which it lives and the people around him/her."

I love my children and I love you. May we all look out for each other.