25 Sep Ofelia Rose Hernandez
An angel in the book of life wrote down my baby's birth. And whispered as she closed the book 'too beautiful for earth.'
On May 4th, 2018, I received the best news of my life – a bright, positive pregnancy test.
Alejandro and I had been trying for 6 months to get pregnant with our first child. Every month that went by with a visit from my ‘Aunt Flo’ or a single line test felt like a lifetime. But this time, there it was. Bold and brilliant as could be.
I kept the news to myself for a couple days, trying to figure out how I would break the news to my husband, who I knew would be thrilled. I searched Etsy for fun announcement gifts, Pinterest for clever ways of letting him know he was going to be a Papa. But I got impatient and on May 8th, I simply wrapped the pregnancy test in some purple tissue paper, threw it into a black and red plaid bag (not the most aesthetically pleasing combo – but hey, it’s what I had) and gave it to him as an ‘early birthday gift’ – his birthday is May 10th. His eyes filled with tears and we gave eachother a good long hug, completely overjoyed.
I called my Dr. to let her know I got a positive and she ordered a urine sample to confirm. That came back positive as well.
Based on my last menstrual cycle, I was 5 weeks along. We couldn’t wait to tell family and started spreading the news to them right away. We made handmade cards for Alex’s mom and my grandmother, who both lived close enough to announce in person. We told the Grammas-To-Be first, and then announced to our grandparents, siblings, and eventually, to our closest friends. Everyone was to excited to hear the news – they all knew how badly we wanted this, and they definitely had been crossing their fingers for our success.
We bit out tongues and avoided any social media hints until we had our 12 week nuchal translucency screening. The scan came back great, with the lowest risk scores they could give for Down Syndrome or Trisomy 18. We were ecstatic and decided it was finally a good time to tell the rest of our world.
We spent the next 7 weeks naive in the bliss of what seemed like a perfect, healthy pregnancy. We decided we didn’t want to know the sex of our baby, and that Alejandro would be the first to know during delivery and could announce it to me and the family when he/she arrived. We started building out our baby shower wish list, and I spent hours on Pinterest again, looking for gender neutral baby shower games and decorating ideas. I hunted down my favorite handmade baby clothing boutiques on Etsy and from Instagram and ordered some neutral clothing for our little one to wear during the first few months of their life.
Seven weeks later, we had an early anatomy scan at 19 weeks pregnant. I was nervous, but nobody expected anything to show up.
The scan seemed normal. We knew it was going to be a long scan, and so I wasn’t nervous when the ultrasound tech seemed to take their time. They asked us if we wanted to know the baby’s gender and we confirmed with them that we did not. They disappeared after awhile to confirm with the doctor that they didn’t need any more measurements. They were gone for what felt like forever, and both Alex and I felt a bit uneasy – but brushed it off because it had taken them awhile to come back during our 12 weeks appointment, and results had come back as good as they could have. They finally returned and told us we were good to go home.
Not more than 30 minutes later, I got a phone call from a genetics counselor in San Francisco, telling me she had some unexpected news. During our scan, they found out that our baby had an omphalocele (a birth defect in which an infant’s intestine or other abdominal organs are outside of the body because of a hole in the belly button area. The intestines are covered only by a thin layer of tissue and can be easily seen). She mentioned termination, and my heart sunk in my chest.
How could this be possible? What the hell was an omphalocele? How did this happen?
We scheduled a next day appointment with her to get information, go over options and, of course, immediately started doing research of our own. During our appointment, we cried and felt helpless, but after doing research and connecting with MOO (Mother’s of Ompohaloceles) we decided it was okay. Our baby was going to be just fine with a quick surgery after birth. The odds of success were in our favor and we leaned into the hope of having a healthy baby.
Our pregnancy was now officially considered ‘high-risk’, and my new OBGYN suggested that we opt in for amniocentesis (the sampling of amniotic fluid using a hollow needle inserted into the uterus, to screen for developmental abnormalities in a fetus.) to make sure that this was an islolated issue, and not linked to something more severe. We opted in and that day we also had our first level II ultrasound in San Francisco.
Later that day, I got a call from my doctor saying she was suspicious of BWS (Beckwith-Wiedemann Syndrome) because our baby also had an enlarged abdomen – measuring 13 days ahead. Our genetics counselor said that we could have her tested and suggested Alejandro and I also be tested, so we could know if we were carriers or if our little one just happened to be the 1 in 13,700 babies born with the syndrome. We did blood testing for that as well, we wanted to know everything we could about our baby and their future health and wellness – as well as the potential for our future pregnancies to be affected. The results came back positive – our little one had confirmed BWS, but our blood results came back negative (great news! We were at no increased risk for future pregnancies.) Again, the genetics counselor talked to us about termination, and asked us if it was something we wanted to move forward with. We had already been doing our research on this, and I had joined a Facebook group filled with BWS parents and adults and felt really encouraged by all of them that everything was going to be okay. The beginning would be stressful and take extra effort and appointments on our end – but overall, these kids did very well and after about age 10, life moved on for them just like anyone else.
We waited for the amnio results to come back – hoping nothing else would show.
My genetics counselor and her colleague as well as my high risk OBGYN told us to not worry, we had our answer and they did not expect anything to show up on our amnio results that we didn’t already know.
With all the new surprises and turn of events we decided to find out the sex of our little one. We wanted to know who we were talking to, praying for, hoping for – anything and everything we could know, we wanted to now. During our level II ultrasound, the technician had written down the gender and placed it into an envelope – we decided it was time to open it.
We were having a baby girl.
Something I had been sure of from the beginning, but the confirmation brought me to tears. It brought us both to tears. I was going to be able to buy the baby bows, and ‘girly’ frilly rompers I had been obsessing over. I ordered a couple outfits for her right away, and eagerly waited for them to arrive in the mail.
On Thursday, September 6th, I got a phone call from my genetics counselor while I was cutting out baby shower invites I had made for our baby girl. I answered optimistically and ready to hear confirmation on what they told me to expect.
But, tone of her voice put me off and her words solidified my fears. Our baby was also found to have a large deletion in her 18 chromosome (distal 18q-). We talked with the counselor and confirmed on our own with research that her outlook was not good. Her list of issues that were likely to occur was long and heartbreaking. Mental retardation, nerve issues, seizures, psychological issues (depression, psychosis, schizophrenia, etc), physical issues including muscle dystrophy that would make it likely that she would never be able to walk or sit up on her own, increased chance for infection – which would not pair well with the increased cancer risk of her already having BWS and needing surgery after birth for her omphalocele. Her life expectancy was between birth and 31 years.
We had to make the toughest decision of our lives, and time was not on our side – I was already almost 22 weeks pregnant. We thought long and hard, and ultimately, we decided we couldn’t let our baby girl suffer – her soul trapped in a non functioning body. A life filled with medical issues. A life full of frustration – of being unable to communicate, to walk, to live a full life. We made the decision to terminate our pregnancy.
I opted in for an induced labor and delivery. We had to see our baby girl. We had to hold her, tell her we loved her and that we were sorry.
On Sunday, September 16th 2018, was induced at 8:30pm with an oral medication – I cannot be sure what the pills were called, but I can tell you it took all the strength and faith in our decision I had to swallow them. We stayed overnight in the hospital, trying to get sleep and staying strong for each other. By midnight, I was 1cm dilated. Early Monday morning, I started having intense contractions that I could not sleep through. I didn’t want to take any sort of pain reliever, because I felt I owed the experience to our baby girl, and I wanted to be as present as possible during it all. Around 2am, the little strength I had left wasn’t enough. I called the nurse and she gave me morphine – I was upset with myself, but I greeted the much needed sleep with gratitude.
I woke up around 8am to a slight trickle. A new nurse came in right as it happened – her name was Anna and she became mine and my husbands lifeline through all of this. She was truly an amazing woman and so compassionate towards us and our situation. She checked to see if my water had broke, but it was just blood and she said that it’s a sign things are moving along. She asked what my plan was for pain relief during labor, and suggested an epidural because of the high chance of my placenta getting stuck and needing a D&C after delivery. I’m so glad that I eventually opted in for one, because it ended up being used in my emergency surgery later.
She left the room to give the anesthesiologist a heads up we would be needing an epidural. While she was out of the room and I began to feel immense pressure and pain. Like the worse menstrual cramps of my life – it radiated through my back and down my thighs. I thought for sure our baby girl was coming right then. Anna came back into the room and I told her I was feeling a lot of cramping and pain, she helped me breathe through it and moment later, my water broke.
We were expecting access fluid because of our daughters case, but I never imagined so much in my life. It spilled off of the hospital bed and onto the floor. Immediately afterwards, I got my epidural. Before it had time to kick in, I was 5cm dilated and 100% effaced. I gave 3 pushes and our baby girl entered the world.
Ofelia Rose was born on Monday, September 17th 2018 at 9:15am.
I was 22 weeks and 6 days pregnant. She was beautiful, and she was perfect. She had my feet and her Papa’s hands. Small blonde fuzz on her head. Her nose was a perfect combination of both of ours. Her ears were just like her Papa’s. She was 1lb 8oz and 13”. She had passed away during labor. They laid her on my chest right away – I have never been so overcome with the mixed emotions of joy and grief.
I was injected with something to start the placenta from detaching. It came out 10min later and they thought it was whole because it was so large. A short time later, I started hemorrhaging and had to be taken to the OR for an emergency D&C (dilation and curettage). I lost around half of my blood and the surgery lasted about 40 minutes. They kept us overnight to monitor me.
We held Ofelia a lot. She looked and felt so unreal.
It was hard to believe everything that had happened. It seemed like it was only a few days prior that we were celebrating her expected arrival, and now here we were, soaking in every minute of time we had with her before we had to say our goodbyes and let them take her from us. We had her hand prints and foot prints taken. We took home her blanket and the gown and cap they gave her to wear after she was born. Around 9pm on Monday, we gave her our final kisses and asked the nurse to take her from us. Waking the next morning and leaving the hospital without her was probably the hardest part of it all. Anna (our nurse), was there again to walk me down to the car on Tuesday mid day, to give me a big hug, and to tell me everything was going to be okay. I will forever be grateful for her.
Our first night back home was rough. I had a breakdown when I moved my pregnancy pillow off the bed and then decided I wasn’t ready to sleep without it – over a week later and I am still sleeping with it, not quite ready to let it go. I put the blanket they had wrapped her in on my chest, right where I wished she could be. I don’t think that blanket will ever leave my bed. The next few days, my arms felt lonely. They were aching to hold something and I broke down and cried again when I realized our dog, Argos, was too big and heavy to fill that empty space for me.
Our first milestone was reached on Monday, September 24th 2018. It was a week since our baby girl was born. I felt so much grief and sadness. We lit a candle to honor her, and I stared at her picture on my phone while I placed her latest ultrasound photo on the bed with me.
We told her how much she was missed. How much she is loved – that we hope she knows we always wanted her, no part of us wanted to let her go. But we chose a lifetime of emotional pain so that she would never have to suffer.
None of this will ever be easy. It isn’t something that we will ever ‘get over’ or ‘move past’. But, we have faith that, through this, we will become stronger – both in marriage and as individuals. We will give each other more patience, appreciation and understanding than ever before. We will look to live each day in honor of her beautiful spirit. I carried her ever second of her life, and we will continue to love her every moment of ours.
We will always be her Mama and Papa. Ofelia Rose will always be our first born child. Nobody, and nothing will ever take that from us. She is a part of us, and so she will remain present, even if it’s only in our hearts.
As long as I can I will look at this world for both of us, as long as I can, I will laugh with the birds, I will sing with the flowers, I will pray to the stars, for both of us.