I have a lot of things I could say lately, but I’m not really sure where to start… On Thursday of last week we went to Children’s Mercy Hospital with my mom and Nathan’s parents, thinking that we were going to hear the autopsy and comprehensive genetic testing results, and get answers on why Hannah died and what caused the pulmonary vein atresia, and what the chances were of this happening again. We met with Dr. Geoff Allen, the director of the PICU, and he went over the results. Hannah’s autopsy results confirmed what they had seen clinically, that she had pulmonary vein atresia and her veins were too small to sew into the correct location on her heart to sustain life. The twelve pages of the autopsy report were filled with big words I’d never heard of before, and the doctor didn’t go over everything. I wish I had a close friend who was a doctor well-versed in anatomy who could sit down with me and explain everything in the report. Every time I try to read it, I just cry because I don’t understand what it’s saying. I wish I could comprehend the details of what my little girl went through physically.
The comprehensive genetic testing that the chaplain had promised us on the day Hannah died as a “service to all families whose children die at CMH” never happened. All they had was the basic chromosomal testing, which showed normal results. My hematologist, Dr. Tancabelic, explained that in order to do more minute genetic testing (called microarray), they have to know where to look. They have to have a specific gene to look at in detail, and at this point we only have a slight idea (thanks to my dear high school friend, Eric, who is a geneticist) where to start looking for answers. I wish a doctor could just look into his genetic crystal ball and tell us the chances of carrying a healthy child to term in the future, but the truth is that, even with the best medical technology, doctors are really just like weather forecasters in the end. They can use the forecasting models to predict the likelihood of future events, but they aren’t God. Only God can control the weather patterns, just like only God can control the development of a baby.
The good news is that CMH saved some tissue samples, so we MAY be able to get some further testing done in the future. I’m just so confused about this process and where to go next, and my short-term memory is so bad that I keep forgetting to call the genetics office back (again) after I called them Friday with no response. When I spoke with Nikki in the genetics department on Friday, she said the first appointment they have is not until May 8th. We can’t even get in to see someone to try to figure out what to do and where to go until May 8th. I will turn 36 on May 15th, which in reproductive land may as well be like turning 90, right?
Our hearts (especially mine) longs to have another living child and another successful pregnancy, to not “end on this note” of death and sorrow, but we are so wounded that we both don’t know how or if or when to move forward with even thinking about that. Someone told me the other day that we have to consider that it might be time to stop hurting our families (grandparents, aunts, uncles, etc), and that at some point we have to decide when enough is enough. It was painful to hear that, but maybe she was right. At the same time, I know in my heart that our family is not complete, and I would be willing to go through this again for the chance of having another ray of sunshine in my heart like Adelaide Grace. I remember a few years ago when we met a woman who had gone through 8 pregnancy losses with no living children, and Nathan asked me why anyone would put themselves through that. He thought she was crazy for continuing to put herself through that heartache. It was after we had only had one miscarriage, and I said, “Well, I imagine that you keep trying when the hope you have in your heart for a child is greater than the fear you have of losing another one.” As parents we would do anything for our children, in life and in death, and this includes what we have the potential to go through in getting them here safely.
Also recently we have heard several different stories of adoptions gone awry, and neither of us has ever really felt called to adoption. I truly feel that adoption needs to be a calling from God. You can’t just not be able to have a baby biologically and “decide” to adopt. Well-meaning people who don’t understand say, “Well you can always adopt.” Um, not really, and I’m quite offended that you would say that to my face. Adoption is costly and heart-breaking and has very stringent parental qualifications. The home study is intense and expensive. The birth mother can change her mind at the last minute. The birth mother can lie about drug use. The baby can have problems attaching. The older child can be hell on earth to live with. We know of more than one family that has rescinded an adoption of an older child due to behavioral issues. I’m not saying that adoption can’t be beautiful and wonderful. We also know plenty of families for which it has gone well. I’m just saying that people have this notion that adoption is the care-free, heartbreak-free “answer” for families like us with multiple losses, when really it often just leads to different scenarios of child loss heartbreak.
For those of you with shorter attention spans or limited time, I’m going to write a separate post about the other things I want to say. I still haven’t really figured out how to put headings in my posts. So think of this as Part 1 of my random thoughts. And Part 2 will be later…
Transparent Graces 