Diagnosis

Dear Nora,

I have had letters to you piling up in my head since the day we went in for what I anticipated would be a routine anatomy scan in November. I am so grateful that your Daddy was able to come with me to that appointment. We’d been in COVID lock down in Germany so he had been unable to attend any of the other appointments. Luckily we were able to secure our babysitters for your sisters and we were excited to go together to this one. We couldn’t wait to see your sweet face on that screen and count your little fingers and toes. I don’t know what I would have done there without him. Never in a million years did I think that we would sit outside that ultrasound room failing to fight back tears while waiting for paperwork and dodging glances from other pregnant women whom I knew I was making very nervous.

The ultrasound technician for the 20 week anatomy scan in Germany is equivalent to a high risk OB in the US. Her role was a little more overarching than your average ultrasound tech and her knowledge much greater. She was kind and gentle and began the scan like any other. I verified my name and birth date, situated myself on the table and exposed my entire, growing abdomen. The gel was warm and comforting. We reassured her that speaking in German or English would be perfectly fine. If I didn’t understand something in German your Dad surely would have and if he didn’t understand something medically, I surely would have. So, she began the exam cheerfully saying, “Hallo, kleine Maus!” (“Hello, little mouse!”) a term of endearment for young ones. Most of the scan had proceeded normally. She pointed out different bones and organs and measured them for her records. She commented on how wiggly you were. She spoke with the nurse in German, I wasn’t paying attention to that, but rather staring at every bit of you I could glimpse. Then, seemingly out of nowhere, she asked me if my sister’s Turner’s Syndrome had presented with any heart defects. I answered honestly with a “yes, but not until later in life.” and she moved on quickly.

It wasn’t until she returned to the heart that I noticed it. Something wasn’t right and I’d seen it before. She paused and explained that she had asked about heart defects because she had noticed something wrong with yours before. She needed to look at it better and would be switching to performing a fetal echo. This view brought more detail and a sinking feeling in both my stomach and my heart.

Hypoplastic Left Heart Syndrome. Those four words changed everything. I had said them more times than I could possibly count in my career as a nurse, but I’ve come to know them more intimately than I ever knew I could in the weeks and months following your diagnosis. I have come to know many things I had never dreamed of before that day. I know now what feels to be the true depths of despair, hopelessness, and loneliness that I imagine only a parent faced with something like this can know. I know what it feels like to wish, pray, and beg for something you know can never be. The urge to bargain and barter is very strong in situations like ours. I know an anger I never knew before too. I know denial. I know grief.

From there the appointment is a bit of a blur. The doctor examined your heart thoroughly as I fought back tears and your Dad looked on, concerned. She looked for other defects that may have been hidden in your brain, among your fingers and toes, or upon your face. When the machine was finally turned off and the lights turned on, she handed me a washcloth to wipe my belly clean and invited us to join her at a small table in the corner. That’s where she drew the areas of your heart that had grown improperly over the freshly printed illustration of a normal heart anatomy. I had given diagrams just like these, drawn by surgeons, to my patient’s parents in a previous life. Her words floated by me, unheard, as she brought back the memories of white board diagrams of a child’s heart and the three surgeries that were being used to combat the effects of their anatomy. Memories of children fighting to heal, caring for chest wounds, celebrating the removal of chest tubes and feeding tubes and every step that was taken. A flood of patient’s faces was opened in my mind as I remembered caring for them, holding their parent’s hands and sending them home with a bubble parade only to see them return in need of more surgery and more care. “I think that’s enough information for today.” she’d said as she handed me a tissue.

The drive home was almost as silent as it was short after we debated starting the discussions we knew would follow that appointment then, when we were without the distraction your sisters would bring, or waiting until we were home. We both cried after the babysitter left and explained to the ever inquisitive Ellie that even Mommies and Daddies get sad and cry. We told her that we had learned at the doctor’s office that the baby had a big bad heart boo boo that made her very sick and it made us very sad. She seemed content with that explanation, but gave many good suggestions as to how to fix your heart boo boo including kisses and a bandage. We moved through the evening routine because we had to. We called each of our parents and explained the news we’d been given. Then we began what would be a very long information gathering process. I read every article I could on HLHS even leveraging my dear friends and their access to the most recent medical journals. I made you a binder with our medical information, the most important and relevant journals, and all the questions we had. I created a several page resource on HLHS for our families so they could understand what your diagnosis meant and the journey we faced ahead.

By the beginning of December, we were relocated back to the US and had our initial appointments in Seattle. We were faced with a seemingly impossible choice: to put you through multiple open heart surgeries or provide you with palliative care. I searched for guidance in deciding something that I wasn’t sure how anyone ever knew how to decide. I was very certain that no one should have to make a decision like this one though. Looking back, I don’t think guidance was what I actually needed (thank goodness because I truly don’t think any exists for this kind of thing). I think what I needed was time for acceptance. Acceptance of a decision that my heart made long before I was able to acknowledge it. I needed to accept that in this case, it was going to take a lot of courage and love to know that we needed to let you go. Ultimately, that is the conclusion we have come to and at times it feels unbearable.

I am so grateful that I have your Daddy to walk this unimaginably painful path with me. I am grateful that we both needed time to acknowledge what is best for you, what is most important, and what we wanted for you out of life. I am grateful that we have each other to find strength in. While it will be incredibly difficult and painful, I am so very grateful that we get to call you ours. Even knowing it will only be for a short while, I feel so blessed to be your mother. Knowing you now and never getting to truly know you are both simultaneously the most beautiful and most heartbreaking facts of my life. I worried that we would always question our decision no matter what it was that we chose for you. I worried so many things and I still do, but that is one thing I no longer worry about at all. I know in my heart that this is the right path to take, as painful as it is for us, it is undeniably best for you and that is all I could ever hope for.    

For your entire existence so far you have been prayed and wished for. I prayed for you in our darkened bedroom before falling asleep at night. I prayed for you in every church we visited during our month long, multi-country road trip. I wished for you on that wishing rock your sister and I found in a railroad museum. Still, I was completely shocked to learn we were expecting you. I was excited too; what great joy you brought after what felt like a devastating loss. How silly I was to think I knew of devastation then.

Though I prayed and wished for you, I was not the only one and before we knew of you was not the only time. After we shared your diagnosis of HLHS with our loved ones you, my love, were prayed for a lot. More than I think we will ever know. You were placed on prayer lists of all denominations in all types of places of worship all around the globe. They still pray and wish miracles for you now as I sit in the stillness of the night and write to you. I still pray and wish for you too. I pray that you will know our love for you and that you will get to meet your sisters. Most of all, I pray for your peace and comfort. After all, that’s why we chose this path for you. We wanted nothing but comfort, peace and love for you. We wish for you to know nothing but love for your whole life.

I have so many beautiful, more eloquent things I’ve written to you in my head and in my heart. I hope you have been able to hear them because I know this doesn’t hold a candle to what I’ve been storing up inside. In there, there has been talk of signs from songs and poems and nature. Beautiful thoughts and memories of you and your sisters already. Along with so many dreams and hopes I had that are now gone or that have had to change. So many things that I felt were taken from us all. So many things I have wanted to say to you. I’m sorry I didn’t start saying them here sooner so that this letter would be better overall and less disjointed. But that is just one more thing I cannot change, so I’ll just end with this particularly beautiful passage of a poem that has stuck with me:

“We’ll shelter her with tenderness,

we’ll love her while we may,

and just for having loved her,

forever grateful stay.

But should the angels come for her

much sooner than we planned.

We’ll brave the bitter grief that comes

 and try to understand.”

My sweet Nora, we love you more than I will ever be able to express and I hope with all my heart that that is one absolute you will take from this life.

All my love,

Mommy  

Originally written to Nora on January, 8th 2021