Dear Dr. K,
Bear with me - it's been five years coming for me to write this letter. Do you know how long that is? It's about 1, 826 days. To be honest, you probably don't even remember me, or remember me well. I know I'm not any more "special" than any other patients you see. Day in and day out, you see high risk patients....mothers with problems, babies with problems, and for that in particular, I do feel for you. The job must be demanding and stressful and tough. I can even see why you might desensitize yourself to situations such as Meagan's and how that may help you cope with the news you have to give to families day in and day out. But just because I can sympathize, or understand, or try to treat you with respect doesn't mean I agree with you or what happened in our first meeting 5 years ago.
Five years ago, I blissfully went in to my 19 week ultrasound to check anatomy on our 5th daughter. As the scan concluded, and I saw the large black space where typically I had seen the brain of our other children, and although I was blissful, I was not blissfully unaware. I knew something was wrong....very wrong....and off I went from my appointment with a pink piece of paper labeled "hydrocephalus" to come and see you for further testing.
After our initial scan, you confirmed that yes, indeed, our daughter did in fact have a severe case of hydrocephalus. You told us that her brain (what was left of it) was under severe pressure. You said that she probably would not have a good outcome and that if her hydro was caused genetically, she wouldn't even make it to birth. What you did not know is that I had already googled, searched, and read all I could about hydrocephalus and while a lot of it was scary, it didn't change the fact that she was still my daughter and I loved her.
When you talked with us about the outcomes for Meagan, you listed all the things she would not be able to do. You told us she would not walk, talk, smile, coo, move, or do many other things we would expect from our sweet girl. What you did not know is that it didn't change the fact that she was my daughter and I loved her.
When you suggested we terminate (ie: end her life) due to these circumstances, you told us if we needed time to think (since we were up against the deadline to terminate in our state), we could even go to other states that had later term abortions. You told us that it would be hard on us, our normal routines and our finances. You told us that our older four children would suffer to have a sister with such needs. What you did not know is that it didn't change the fact she was our daughter and I loved her.
When we fought with you over every scan, refusing the amniocentesis, telling us proper measurements of remaining brain tissue, and ultimately signing us off to have my own OB deliver her, you always made sure to tell us the negative. The can'ts. The won'ts. And when we wouldn't listen to you, you sent us to your "genetic counselor"....who was only full of more can'ts, won'ts and nevers. She again asked us what we would do with a child "like Meagan" impacting her four older sisters lives. What you didn't know is that none of that changed the fact that Meagan was our daughter and I loved her.
Well, here we are. Five years later, and I would like to tell you about Meagan. First, I will take your approach - clinical and labels. Yes, she does have her hardships. She has had 15 brain surgeries. She has epilepsy. She has feeding difficulties and GI troubles. She has gross motor delays and fine motor delays and cognitive delays. She has growth problems. She gets hit harder by illness than her sisters. She is, well, in a term you will probably understand, 'different.'
Now let me really tell you about what she is like - meaning her soul, her personality, her being. Meagan is a complete joy. Everyone that meets her smiles, laughs, or takes away a sense of love and compassion. Meagan moves. She kicked her legs and moved her arms for over four years and then this last Christmas, she just started walking. Granted, she walks a bit like someone who has had a few too many - but we don't care. She also does use a walker and a wheelchair - but again, we don't care. That's just Megs. Meagan laughs. She is funny and has a sense of humor to rival the most famous comedians. Meagan loves. She loves her sisters, her family and her dog. She loves her teachers and even those she doesn't know well. She will hug a complete stranger and ask anyone in passing "whats your name?" Meagan eats. For the last 3 years Meagan was 99% tube fed through her feeding tube - but that's still eating! Recently, her oral eating has suddenly taken off and so now she eats two ways. I bet you can't do that. She can. Meagan plays. She plays with her sisters, plays with her friends, and plays on her own. She really enjoys Peppa Pig and Sophia the First and Frozen. Meagan sings. She can sing any song on the radio she hears, even if only once. She sings to her baby sister. She sings to me. She sings to anyone who will listen as I push her through the grocery store. Meagan has an amazing memory. Short term, notsomuch. But long term - wow...don't say anything around her you don't want coming back to bite you! We always joke with her future teachers that they will have to give her tests 4-5 months after she learns something so she can recall the information. It's ok - you can laugh. We have a lot of laughter around here - it's important.
I could go on, but, I think you get my point - you see, you were wrong. Amazing, I know....but it seems you don't know it all. I couldn't even tell you what my typical kids would do or not do when they were born so I was a little worried you seemed so sure - to embody some superpower that no other human I know has - the power to tell the future. But luckily, I have come to know that no - you are just a regular person like the rest of us, and just as bad at predicting the future as anyone else.
Now for the blunt part - and I want you to read this very carefully because this is the most important paragraph I am going to write to you. This is the most important thing I have been waiting to say to you, and will ever say to you regarding Meagan. Even if Meagan did NONE of those things I listed above - you would still be wrong. Because you see, my children aren't my children because of things they can do - they are simply my children because they are. Notice the reason there at the end of that sentence? Right - there is NO reason or qualifier or checklist that makes my children mine....other than they just are. Even if Meagan never did ANYTHING, even if God forbid something happened where she lost some of her progressions or development...... I would still love her, I would still be proud of her, and I would still be incredibly grateful, joyful and thankful that she was mine. Because you see, what you don't know is that none of that changes the fact that she is our daughter and we love her. From the moment she was conceived, she was ours.......and she was a beautiful soul.
I truly hope this letter finds you well. I wish you long years of happiness and health and joy. But please don't look for all of that in the wrong places. Sometimes the greatest gifts we have in life come from the greatest challenges. It's ok to outline the challenges - I get it. Liability. Scared parents. Your job on the line. And little interaction with the special needs community outside of your ultrasound machine. But try to not forget you are actually that baby's doctor.... and your job is first to "do no harm." Help parents to understand the problem - all outcomes across the spectrum. Direct them to support groups, medical doctors who can further explain the condition, and help them to reach out to other parents who have children with the same situation so they can find strength. Encourage them to come back to you and visit so you can see how amazing their child is - and so you can also stay balanced and truly see these children for who they are - beautiful souls with value - not a diagnosis out of a medical text book you haven't looked at in years. Remember, even our children born "perfectly typical" can quickly change in the blink of an eye. (Speaking of typical, our older four daughters are doing just fine. They have a level of compassion and love you would rarely find in children of their ages. And two of them want to go in to medicine because of Meagan. We even added to our family and gave Meagan a baby sister who will grow with an equal amount of compassion and love... I call that a win win!)
One day, we do want to bring Meagan back to see you. We want you to see her sweet hazel eyes, her rosy cheeks, her teeny tiny little legs, her pretty brown hair, and her contagious smile and sense of humor that will be sure to brighten your day. I hope that then, you will finally know and feel what we have always known - she is not a label or a list of can'ts.....but a little spitfire...a small piece of heaven God allowed us to have here on earth for however long that is.... she is just our daughter - and we love her. Unconditionally. Forever.
Molly and family