Medical Input...the Good, the Bad, and the Ugly

This past Tuesday we had a couple of consultation appointments set up. First we met with Sara, the genetic counselor whom we met on September 26, just before our diagnostic ultrasound for Verity. This was a good and productive meeting. Sara was very well prepared and gave us a lot of positive information about babies and children with Trisomy 18, some of which is in written report form that I was able to take home and peruse when I had more time and brain cells.

Based on our ultrasound findings, both in September and in October, Sara thinks Verity has a good chance of survival. Obviously there are no guarantees, and there are often things that ultrasounds can NOT pick up, but the overall picture shows us that she seems to have a “head start,” so to speak: if any baby were to have a positive outlook with this diagnosis, our Verity would seem to be one who may enter the world ready to fight the good fight.

Sara’s whole demeanor was extremely positive and encouraging. She said she was going to give us the full story of the hopeful end of the spectrum, even though we are all fully aware of the grim statistics. In her words, we would get enough of the negative from plenty of other sources, so she wanted to focus on things that would be helpful for us in the event that we are able to bring Verity home from the hospital.

So we discussed things like feeding options, breathing assistance, and so on. Ted had to leave a bit before our meeting time ended since he had to get to the airport for a work trip. I was bummed that he had to leave before we saw the NICU doctor but figured it wouldn’t be a big deal to fill him in on the information later.

As it turned out, I definitely could have used the moral support.

Dr. B works in the NICU. I was looking forward to hearing what measures the medical team would naturally take at the event of a Trisomy 18 birth. I was rather startled when nearly the first thing out of his mouth was something about dealing with a “retarded” child. He then seemingly excused his use of that term by explaining that he grew up with a “mentally retarded sister.” Over the course of our meeting—which was less a conversation than it was me listening in stunned silence—I gleaned some information that gave a bit of insight into his wording and overall lack of understanding or compassion for this situation.

His sister did not get enough oxygen at birth, and so she lived her 19 years with a mental handicap. This apparently took a toll on the whole family; he spent a fair amount of words talking about the importance of “buy-in” from the whole family, because when there is a baby/child with these kinds of needs, everybody must pitch in and help. And while I don’t disagree with that, I firmly believe our family has a MUCH different perspective already…our kids understand that we have to work hard together and serve one another in order for things to run halfway smoothly! If we want to have fun, for example, we need to be willing to work together to create the time and space for certain memory-making times to happen. But life in general involves putting others’ interests and needs ahead of our own. We don’t always do this with humble, Christ-like attitudes, but still…we have this basic understanding from Scripture and work hard to teach it to our children. A precious moment that lives in my heart just from today? Seeing my 13-year-old son holding his 3-year-old brother by the hand and leading him to the family room for a story so Mom could finish something in the kitchen. My kids ALREADY help their siblings, and they don’t resent it (most of the time!). They distract the baby while I’m wiping her poopy butt so she doesn’t spread the mess. They watch out for little ones who are trying to explore something that could be harmful. They read and color and play with each other. Even the older ones look out for each other…maybe doing someone’s chores when they have other activities or making sure a sibling doesn’t feel left out at a youth event.

I digress. Back to this meeting, which I do wish I had recorded to make things easier for communicating with Patient Services. It’s been a few days, and my emotions have simmered down. I don’t remember exact wordings for everything, more like impressions. One such impression was related to the “buy-in” comments, making me visualize a family meeting where we all sit down to have a vote…are we going to “let” Verity live what this man considers a “futile” life (that word IS one he used with alarming frequency), or do we have better things to do?! (Please note he did NOT actually say this—this was an impression I got upon listening to what he did say.)

Another idea had something to do with his own experience…a child like this (i.e. mentally/ developmentally delayed) takes a toll on the whole family. It is a strain mentally, emotionally, financially. For example, Mom couldn’t take the kids to Disney World because of the sister who would have needed special care. Really?! While I love the idea of taking our brood to Disney World, there are definitely more important things in life.

In between these opinions I did at least learn that the medical staff will do basic, necessary measures such as resuscitation, assisting with baby’s breathing, giving feeding help, etc., UNLESS we instructed them not to do these things (which for us obviously isn’t an option). Beyond that…Dr. B indicated that we will need to figure things out depending on Verity’s particular situation and decide what measures we would want to pursue. He spent a fair amount of time talking about heart surgery as an example before admitting that Verity’s heart actually looks quite good, so that shouldn’t be something we need to deal with…but in the event that it does come up, there is a surgeon who has considerable experience and would be there for us. In any case, he made it pretty clear that his own opinion, and seemingly the opinion of most of the staff (he apparently spoke for them all?!) no matter what their “religious affiliation” was that beyond the basic care given immediately after birth, it would be pretty “futile” to do anything else.

I’m sure folks are reading this thinking, “Why didn’t you give him the what-for?!” And truly, as I drove home, shaking with anger and wiping away tears, I thought of a boatload of things I could have or should have said. But perhaps you’ve been in a similar situation where you felt punched in the gut—caught completely unaware, listening to someone say things so far removed from what you expected to hear, that you couldn’t even formulate words in your own brain, let alone speak them.

I did work to wrap up the meeting sooner rather than later, and as I reached for a Verity card to leave with this doctor, I was stunned yet again when he asked me, “This is your last one, I hope?” He then went on to ask what my “religious affiliation” was.

Good grief.

I was as polite as I could be and simply pray that the photo card I left with him will speak volumes of truth to his heart. No matter how long Verity lives, she is ALREADY a blessing and a gift. She is not a mistake. Her life is not futile. As her family, we may have fears and doubts about our abilities to care for whatever her unique needs are going to be, but we don’t doubt that God has beauty and purpose in all things and that He will be glorified.

I created these photo cards to give out to people whom we meet along the way...maybe those who are already praying for us or those who strike up those polite conversations in the grocery store. I know there are days when trying to answer may cause me to be emotional; or there are times when I want to speak truth about our situation but don't have time to share everything. These cards have made their way into a number of medical caregivers' hands as well as our local prayer circles. They also serve as a good reminder to us as Verity's family!