I’m sorry, but the severity of the hygroma leads me to believe that the baby will survive. "Not fit for life", is what they told us. You won’t make it past three months. These words were 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 a 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 babe was given a terminal, not-fit-for-life diagnosis.
Getting pregnant, and being released from Mid Iowa was as far as I had ever gotten in pregnancy. All of my miscarriages and failed attempts had happened in the first trimester. So when I made the first appointment with our OB, I was thrilled! This was the furthest I had ever made it. We went to our appointment, had our ultrasound and waited for the doctor to come in. “The ultrasound showed some areas of concern", they explained. Pointing to the screen, "This area is the nuchal fold...." I looked at Lisa, exhaled and let deja vu kick 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 and said. "We've been down this road." Two weeks later, the NIPT came back negative for any chromosomal abnormality and we assumed seeing the specialist was going to be routine. Boy, were we wrong.
Unfortunately, we weren't scheduled with the specialist we saw and after our “not fit for life” diagnosis and decided tp reschedule. Waiting for that appointment took forever while every worry crossed our minds. Was the NIPT test wrong? Did I do something wrong? Could this have been discovered had we done preimplantation testing? And the list goes on.
At 19 weeks, we finally saw the specialist. We had an anatomy scan first and saw our babe on the screen. The sonographer knew us from our first pregnancy and was aware of the complications with this pregnancy. She did an amazing job reminding us of all the good news. For me, at this point, I felt most apprehensive - holding my breath and waiting to hear a heartbeat. Every time I heard a heartbeat, I felt relief. After a high-risk pregnancy, you learn to ask a lot of questions. Can you see all four chambers of the heart? Is the midline of the brain good? Is there fluid anywhere there shouldn’t be? And, when the sonographer starts typing things out on the screen you remember what they are to look up later.
After the ultrasound we went into the consultation room and waited again. We googled what the sonographer had typed out on the screen and learned that our baby had a 2 vessel umbilical cord. After about an hour, our doctor came in, and the look on her face was one you never want to see. She apologized for making us wait but wanted to check everyone out so she could spend as much time with us as needed. She then explained that everything was much worse than she was originally believed. There were a variety of issues going on with our baby; 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 had seem to not be developing; and I had little to no amniotic fluid. Que, a whole lot of tears. Taking in all this information is like having the wind knocked out of you. I didn't know how to respond or what to say.
One of the reasons we love our specialist is because she explains everything and keeps it real in a very compassionate way. She explained that had the only concern been the hernia, we could have visited a hospital in Pennsylvania that does in utero surgeries. But with the other complications, they wouldn’t operate. She knew from previous experience with our daughter Addi, that termination was not something we would consider, but the option was on the table. She asked what we wanted and what our goals were. We could come back and see her as often as we wanted or never again, whatever felt best. If we let nature take its course, she believed we would have a stillbirth but would connect us with the perinatal hospice team as a precaution. Our second opinion at UIHC in Iowa City proved to be the same.
What do you do? Well, for us there were a lot of tears, a lot of hopes for miracles, a lot of questioning life. With termination out of the question, we chose to celebrate. We decided that however long we got to have our son, he was going to be loved, he was going to experience life, and he was going to share his story. Over the next few months, we met with the neonatal surgical team whose recommendation was comfort care. If/when I got closer to a live birth, we would meet again to discuss what medical intervention looked like. We had our biweekly check ins with the OB and Specialist, who with each visit and each ultrasound, were amazed by how much he was growing, how much he was developing and at one point finally explained that if we were going to have a stillbirth due to the complications, it would have happened already and that we would indeed likely experience a livebirth.
Meanwhile, we announced to our friends and family what was going on, did a gender reveal announcing to everyone we were having a little boy, went to concerts, took maternity pictures, ran lots of races (even an indoor triathlon), had some amazing adventures, and celebrated his 200 day birthday. During this time, I remember writing 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 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 experience a livebirth, 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 plan for a livebirth 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.
On the evening of June 12th, we'd returned home from another busy day of life. Not feeling the best, laid down figuring I was just worn out. At 35 weeks pregnant, we had a specialist appointment the next morning and then an appointment with the neonatal surgical team in the afternoon. A few hours later, I began to feel sick and started having the terrible back spasms. Finally, at 2 am, I woke Lisa and said, "We have to go!:
When we arrived at the hospital, they assumed I was dehydrated and gave be 2 bags of fluid, did an exam and sent me home. Back at home, I tried to lay down but the back spasms were only getting worse. At our 9am appt, they did the growth and anatomy scan. All I remember is that his heartbeat was strong. In the exam room, the nurse came in she asked “Are you in labor?” The doctor teased, “Are you trying to have a baby in my exam room?! Get over to the hospital!”
Admitted – I was already dilated to 3. The doctor tried explaining so many things but all I could think was, "It's too early. This wasn't supposed to happen!" Before I knew it, the doctor checked me again and said, "Patty I can feel him. We have to go." There was no time to talk, make decisions or get an epidural. No, 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 his passing. In hindsight, I am thankful there was no epidural or any anesthesia because I was able to be fully present for every minute we had with our son. All I could do was tell him how much we loved him, to thank him for teaching me so much, and how sorry I was. His last heartbeat was while laying on my chest. Afterwards, we were taken back to our room, a room that I will never forget. We stayed at the hospital for 2 days, and Hudson never left our side. We tried to do all the things; gave him his bath, take handprints, footprints, read stories, + sing songs. A dear friend came and took pictures. We even had his baptism and last rights given all at the same time. I'm pretty sure I didn’t sleep the entire time we were at the hospital. I didn’t want to waste any moment that I could have with him. It was hard not to notice his body changing, the color leaving, his skin hardening and turning cold. 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 and I finally had to tell her “if you keep telling me that I will never leave.”
The next week was filled with planning the funeral, meeting with people, and barely being able to do much. If it wasn’t for friends + family stepping up and taking care of everything, I’m not sure they would have gotten done. There was a lot of silence, but in a good way. We would go 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 was Hudson saying "Hi".
I truly believe that the quality of life has nothing to do with its length and that Hudson's life – however short it may have been, was lived to the fullest. I know he made all the decisions for us. He knew we had that appointment with the neonatal surgical team the 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 hard things and 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, 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, that we get to share his story and can help others experiencing loss and grief. I hope 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 for we are forever changed but we still have the power to continue writing his story – Hudson’s story.