Here is her story....
I was 36 years old when my husband and I decided we wanted one more child. It didn’t take us long to get pregnant, and we were the happiest couple in the world.
I started spotting early on, so I was on bed rest for the first 12 weeks because of that. We knew at week 5 that we were having twins and we considered ourselves so lucky and blessed. Bed rest? Who cares I thought, I can handle this! Then at 15 weeks we found out they were boys, the same day we found out there was a size difference and could be related to TTTS. My Dr then said not to worry too much so I didn’t.
We picked out names, it took us a while but finally we both agreed on each name! Noah and Gael. My husband and I were beyond excited about meeting them face to face! Pain came and went every day all of a sudden, the most pain I have ever been in. Dr discovered I had a fibroid that was degenerating, and eventually the pain was so strong that he suggested terminating the pregnancy because of the fibroid. I am not one to judge termination, and I believe each case is unique and incomparable, but under my circumstances I ignored his suggestion and was even offended by it. There was nothing wrong with either of the babies or with me, it was just pain, I could suck it up. But it was so bad I couldn’t even focus on the possible TTTS for weeks. Then the size difference became a worrying 30% and we could not ignore it any more. My OBGYN then said that there were no treatments available for TTTS in Costa Rica. I asked what was I supposed to do?
“Just wait.” he said “There’s nothing else you can do.”
I went home and read everything I could about the illness, I kept reading that there were treatments for it, and felt so frustrated to be so far from the places that offered them. I decided I needed a second opinion, so I found a wonderful MFM, Dr. Joaquin Bustillos, who explained that he was the only one here that was trained (in Spain) to do laser surgery but that there was no machine in Costa Rica. Frustration and sadness again… He said my one option was amniocentesis so we would do that when necessary, I figured something was better than nothing. My plan was to keep those boys in there as long as I could and I kept reading so many survival stories in the internet and not so many losses, so I figured the odds were in my favor.
After more than 20 weeks on bed rest, the horrible fibroid pain and nights of endless tears from worry and fear, I did my first amnio on January 3d 2012. I was almost 27 weeks pregnant. I figured if I had survived all that pain and the boys had held on for that long, I was just a step away from meeting them! I entered a public hospital to get the treatment. Babies were looking good, and they insisted I stay so that on January 5th they could do another amnio it was just 2 days later… plus!! “if I was at home and anything happened no one would know it was happening” So I stayed THERE, in what I would later nickname: “HELL” because of what I went through in those 3 days.
They did so many tests on me, checked my babies heartbeats with Doppler machines but NO ultrasounds, an ultrasound would have changed a whole family’s story.
Two days later on January 5th, I was supposed to get a second amnio, the Dr. began the procedure with an ultrasound, and that was the moment that changed our whole lives forever.
After a thorough examination Dr. looked serious and I knew something was wrong, he said Noah was not going to make it, but he was being polite, I later learned he had already passed. He said Gael had only a 50% chance of surviving and that I had to go to an emergency c-section immediately. I started shaking and crying and screaming, I had never felt so alone, so abandoned. How could this happen while I was under the careful watch of nurses for the past 2 days? I was hysterical, grateful when they completely put me under for the surgery.
When I woke up I kept wishing it had all been a nightmare. And I guess it was, it was my own personal brand new forever-nightmare. I asked about Noah and they confirmed he was dead, then I asked about Gael and they said he was not doing too well in the NICU.
The whole time I was alone because in CR you cannot have your family stay with you while you are in a public hospital, you can see them only one hour per day. So I called my husband after the ultrasound and he came right away but I had not seen him yet.
I wept in his arms.
I wanted to die.
I could not believe what had happened in a matter of hours.
I felt cheated, and in complete and utter shock.
I wanted to die.
But Gael was still here, as is our beautiful 15 year old daughter Eva, so I knew I had to survive this somehow. I went to see Gael in the NICU and he looked so motionless, I had no idea that that would be the last moment I would spend with him while he was still alive.
I did not hold him.
I barely touched him.
I regret that 100%.
I wish he would have died in my arms, where he was supposed to be.
Not alone in a NICU.
He lived for 12 hours and then joined Noah in heaven. Noah, whom I was never offered to see or hold in the hospital. The day of the funeral the pastor suggested I see them both in their casket and say my goodbyes. I am, to this day, so grateful for that advice.
I was in such a state of shock… Then coming home was part II of the nightmare.
Seeing their room full of things they would never get to use, feeling the milk in my breasts, all those flowers in my house and my empty arms.
My hollow heart.
I cried day and night. Words fall short when I try to describe the months that followed so I won’t even try.
At every Dr’s appointment I insisted on the same recurring theme… how can there be no laser machine here? I decided this had to change, for the women and babies to come, for me, for Noah and Gael. We searched high and low for ways to fund a machine. I told everyone I knew about the fact that the laser machine here was inexistent. We started finding out if other laser machines in CR could work, or even if we could build a home made one. Nothing worked, but my Dr. was determined and so was I.
One year, one month and 16 days, that’s how long it took.
My Dr. Joaquin Bustillos was finally lead to a machine that seemed like it could work so he rented it and decided to do the first laser surgery for TTTS on twins in Central America, on February 21st 2013 which just happened to be my 38th birthday!!! It was the best gift I could have received! AND it was successful!! Two baby girls now had a better chance at living because my Dr and I, amongst other awesome people including some other doctors and TTTS parents, had decided to fight this awful disease in CR on the day my boys went to heaven.
Today: We finally have a machine for private use in a clinic, still need to find one for public use to make it accessible for everyone, even in THAT hospital (“Hell”) But we are so happy it has begun! Quite a start too, my Dr. did the kindest, most beautiful gesture ever when he asked me if he could name the Fetal Therapy Center in the private clinic after my boys.
Soon we will be inaugurating the first of its kind in Central America: The Noah and Gael Fetal Therapy Center.
I don’t think everything happens for a reason, I believe I will never find a reason for losing our two sons. What I can find is purpose for their short lives and meaning for their being so as to keep celebrating their short, but life-changing presence in this world, until we meet again.Maripili Araya, mother of twins in heaven
Surgeons Dr. Joaquin Bustillos and Dr. Ronald Salazar during the first TTTS laser ablation surgery in Central America, done on February 21st 2013.