“Not fit for life,” the doctor said.
“You won’t make it past three months.”
Hearing these words come out of the specialist’s mouth was the last thing we expected to hear. We were 14 and half weeks pregnant with our second child and I’m pretty sure, at this point, my faith in the universe was diminishing.
Becoming mothers has taken my wife Lisa and I down the road less traveled. Over the past 3 years there have been 9 IUI attempts, 4 miscarriages, 1 amazing little girl rocking an extra chromosome, 1 round of IUI injectable, 1 round of IVF, and 1 vanishing twin. Now this, our little miracle who we called “Babes,” was given a terminal, not fit for life, diagnosis.
Getting pregnant and being released from Mid Iowa Fertility was as far as I had ever gotten in pregnancy. All of my miscarriages and failed attempts had happened in the first trimester. So this time when I got to make the first appointment with our OB, I was thrilled! We went to our appointment, had our ultrasound, and excitedly waited for the doctor to come in.
“The ultrasound showed some areas of concern. This area back here is the nuchal fold.” I looked at Lisa and we both exhaled as deja vu kicked in. You see, it sounded exactly like the start of a conversation we had when Lisa was pregnant with our daughter Addi who has Down syndrome. I kindly interrupted the doctor and let him know that we understood what this meant because we had been down this road before.
After our ultrasound we set up an appointment with the specialist and took the NIPT test which, two weeks later, came back negative for any chromosomal abnormality. So, we figured going to the specialist was going to just be a routine visit.
Boy, were we wrong.
Since we didn’t get to see the specialist we normally saw, after our “not fit for life” diagnosis we wanted to reschedule with our regular doctor. The time waiting for that appointment took forever. Every thought crossed our minds. Was the NIPT test wrong? Did I do something wrong? Could this have been discovered had we done preimplantation testing?
Finally at 19 weeks we got to see our regular specialist.
We had a growth and anatomy scan first and got to see our little Babes on the screen. The sonographer knew us from our first pregnancy and knew there were already complications with this pregnancy. She did an amazing job telling us all the good things.
For me, at this point it’s the most apprehensive feeling, holding your breath and waiting till you hear a heartbeat. So every time I did hear the heartbeat it was like a breath of fresh air. After having one high-risk pregnancy you pick up on things or learn to ask a lot of questions.
After the ultrasound we went into the consultation room and waited for what seemed like forever. We googled what the sonographer had typed out on the screen and learned that Babes had a 2 vessel umbilical cord. The nurse even came in at one point and said the doctor was going to see one more person first and then be in. After an hour or so of waiting our doctor came in, and the look on her face was one you just never want to see.
She apologized for making us wait but she wanted to check everyone out so she could spend as much time with us as needed. She then went on to tell us that she hated coming in to tell us what she had to. Everything was much worse than she thought. There were a variety of issues going on with Babes. There was a diaphragmatic hernia in which all of the bowels had moved up into the chest cavity. She couldn’t see a stomach anywhere. There was only one kidney, the left arm seemed to not be developing, and there was little to no amniotic fluid.
Taking in all this information was like having the wind knocked out of you. We didn’t even know how to respond or what to say.
The doctor said she believed we would have a still birth but also wanted us to get connected with the perinatal hospice team. We went to Iowa City to get a second opinion, but the outcome was the same.
What do you do with this kind of news?
For us there was a lot of tears, a lot of hopes for miracles, a lot of questioning life.
We knew termination was not something we wanted to do. So we decided to celebrate.
However long we got to have our Babes he was going to be loved, he was going to experience life, and he was going to share his story. We had our biweekly checkins with the OB and specialist who, with each visit and each ultrasound, were amazed by how much he was growing and developing.
Meanwhile, we announced to our friends and family what was going on, did a gender reveal telling everyone we were having a little boy, went to a bunch of concerts, took maternity pictures, ran lots of races and even a triathlon (indoor), had some amazing adventures, and celebrated his 200 day birthday. During this time I wrote about hope.
Hope – a matter of the heart.
To me, hope isn’t necessarily a tangible thing. It’s a matter of the heart. It’s not about luck, percentages, or prognosis. Its not about numbers, quality of life, outcomes or opportunities. It’s a feeling, it’s a thought, it’s that thing or idea we think about and we hope will happen. Hope can give us courage, hope can help us persist in the face of adversity or aid in getting through our current journey.
For me, hope is flexible. It changes with the situation and sometimes, it changes with each doctor’s appointment. Right now, I hope for time. Time to get to a live birth, time to meet our little man, and as much time as we can have with him.
The flip side to all of this is coming to terms with the reality of the situation and that while we were making a birth and journey plan for a live birth, we also had to make a birth and journey plan for the alternative.
The idea of planning a funeral for your child is the absolute worst, most devastating, soul sucking feeling there is. Yet it was something we had to do.
The evening of June 12th we had gotten home from another busy day. We were 35 weeks pregnant and I hadn’t been feeling the best. I knew we had a specialist appointment the next morning and then an appointment with the neonatal surgical team in the afternoon so I went to lay down. The following morning we saw our specialist and did the growth and anatomy scan.
Through the machine we heard his amazing heartbeat. It was strong. We went into the exam room and as soon as the nurse came in she said, “Are you in labor?” She called the doctor who immediately sent us over to the hospital. When I got hooked up to the machine at 10:49, I was already dilated to 3. All I could keep thinking was, “It’s too early, we were supposed to meet with the medical team at 2, this isn’t supposed to happen.” There was no time to talk, make decisions or even get an epidural.
At 12:32pm Hudson Drake was born weighing 3 pounds 15 ounces and 14.25 inches.
We were able to spend about 35 minutes with Hudson before the doctor called his passing. In hindsight, I am thankful there was no epidural or any anesthesia because I wanted to be fully present for every minute I could have with our son.
I told him how much we loved him, thanked him for teaching me so much, and told him how sorry I was. He had his last heartbeat while laying on my chest.
Then we were taken back to our room, a room that I will never forget. We stayed at the hospital for 2 days in which Hudson did not leave our side.
We gave him a bath, took hand prints and foot prints, read stories, sang songs, and took pictures. He was baptized and had his last rights given at the same time.
I didn’t sleep the entire time we were at the hospital because it seemed like a waste. I didn’t want to waste any moment I could have with my son. I often wonder if I made the right decision keeping him with me for so long, but I know I did.
Then the time came to hand him over. The nurse kept telling me to take as much time as I needed. I finally had to tell her, “If you keep telling me that I will never leave.”
The next week we planned the funeral and met with people. If it wasn’t for certain people stepping up and taking care of everything, I’m not sure anything would have gotten done. There was a lot of silence, but in a good way. We went for walks and I would see things that I never noticed, even though I had walked the area a million times. Butterflies and cardinals often come to visit, and I know it’s Hudson saying hi.
I truly believe that quality of life has nothing to do with its length.
The Gift of Hudson
Hudson’s life, however short it may have been, was lived to the fullest. I now know he made all the decisions for us. He knew we had that appointment with the neonatal surgical team that afternoon to decide between comfort care and medical intervention and it was his way of saying “I don’t want to put the burden of making that decision on you. I’ve got this.”
He also gave me the biggest gift of all, he made me a mother. He proved that I can do all these things. I do not regret one decision we ever made.
Navigating this journey of child loss is a conflicting one for me. There is all the grief that comes along with it. The loss, emptiness, and numbing feelings of things you will never get to experience with your child. The daily doses of tears and having to answer questions like “how many kids do you have.”
But, there is also the joy in his story.
Gratefulness that he picked us to be his mothers and that we get to share his story. That we can help others experiencing loss and grief. There is joy in how his story inspires others.
As the days continue to come and we let the light in little by little, we learn to carry the tragedy of child loss a little differently. Life will never be the same. We are forever changed. But we still have the power to continue writing his story – Hudson’s story.
October is pregnancy and infant loss awareness month. If you have lost a child through miscarriage, we see you and stand by you in your loss. You are not alone. We invite you to fill out a form to visually honor your little one on this Forever Loved Wall.
Patty Sneddon-Kisting resides in Grimes, Iowa, with her wife Lisa and daughter Addi. She loves spending time with her family, running, and working out. She is an advocate for Down Syndrome awareness and food insecurity. You can follow their journey on instagram here: @pattysneddon and @addisonremy.