Guest Post - Mariana Faria

In the first months of 2014, my husband and I got the best news a couple can hope for: we were pregnant. We weren’t exactly trying and, at the time, were a bit far from home spending a year in Barcelona, Spain.

Far from being the ideal situation, I wasn’t worried because I knew that no matter where I was, my husband and my family would always give me all the support I needed.

We were beyond happy with the news of my pregnancy and made sure to find a doctor to follow it with us as soon as we could.

On the first sonogram, after only 7 weeks of pregnancy, our surprise was renewed when we discovered that it was in fact not one baby, but two! That's it: Twins! We had been blessed with two miracles.

In the following weeks, having barely absorbed the idea of being first-time-parents to two babies, we learned that they were a very special kind of twins. I was pregnant with monoaminiotic-monochorionic twins. This is a very rare type of twin pregnancy, which occurs in about 1 to 3% of all twins.

In monoaminiotic-monochorionic twins, the division of the embryo that generates the two twin embryos occurs very late, after its implantation in the uterus. Consequently, the two little babies share the same gestational sac and the same placenta.

They are in intimate contact with each other, as if they grew up in the same room of the same house. Usually, identical twins share only the house, and there is at least one membrane that separates them.

Finding out what kind of twins we had was important not just to find out that we were part of a select group of parents, it also meant knowing the risks that came with this condition.

Monoamniotic twins are at great risk exactly because of the close proximity of the two umbilical cords. Being in close contact with each other, makes it particularly easy for the twins to become entangled in each other’s cords or to compress one another’s cords, endangering their oxygen and food supply. The current consensus is that, without careful supervision, there is a 50% chance of both babies dying in the uterus.

I don't have to tell you how devastating it was to find all of this out. This is not how you imagine your first pregnancy and I had no idea how hard the next months were going to be. 

Being in Spain and having the privilege of benefiting from a high quality health system, I was quickly referred to a high risk OBGYN. At our first appointment, he explained to us that, due to the risk of cord entanglement, monoaminiotic twins are delivered at no later than 32 weeks of pregnancy. He made sure we understood what this level of prematurity meant and that NICU time was almost certain. The doctor also explained to us how the pregnancy itself was going to be carried in terms of doctor's appointments and routine sonograms.

A few weeks later, after deciding to go back to Brazil, our home country, everything became a lot more difficult and a lot more stressful. Though a Maternal and Fetal Medicine specialty is relatively common in places such as the US and European countries, it is rather rare in Brazil. Finding a doctor that appreciated the risks of a monoaminiotic pregnancy and was up to elaborating a care plan for us became a real ordeal.  

We quickly realized we were going to be our babies' advocates and have to demand the care we believed they deserved from our doctors.

We became acquainted with all things twins-related. We had sonograms done quite frequently and paid extreme attention to every inch of those screens as they were being done. We watched our girls grow and, as they grew, so did our fears. The bigger they got, the more dangerous it was for them in uterus. We saw their cords entangled and were always, ALWAYS, worried. 

Differently than most parents of premature babies, we already knew that our children were going to be born a lot before their due date, so we also began to prepare ourselves for NICU time. But, stranger as this may seem, I was kind of looking forward to having my babies in a NICU, because that would mean they had actually survived the pregnancy. 

The experience of fearing for your unborn babies’ lives is a nerve-wracking and heart-wrenching one. How to you allow yourself to get attached to a child when you don't know if she is going to be born at all? How to you allow yourself to buy a crib for a baby when you are not sure if she will ever sleep in it? 

We were living in a limbo, caught between happiness and fear, excitement and restraint.

All of that changed in a warm September morning. I went for, what seemed to me, our millionth sonogram and the doctor quickly noticed that the knot in our girls' cords was getting too tight. The blood flow was decreasing and he rushed to call our OBGYN and let him know. I was 30 weeks pregnant. The next morning I was at the hospital, where they would prepare me for delivery. That meant administering me with magnesium, to help strengthen my girls' immature lungs and help them endure life out of the womb. Turned out there wasn't even time for that. 

In September 11th, 2014, my babies were born through an emergency c-section.

And from this moment on, my story gets a lot similar to almost all preemie parent.

When you get pregnant, you have expectations about the birth of your baby. You dream about it. You make plans for those first days of getting to know your newborn. 

Everything is different when you have a premature baby.

My girls didn't cry when they were born. You see, your entire body expects to hear your baby cry at birth. This is a natural thing. You crave for those sounds. To me, my girls’ silence made it felt like there was something missing from that experience.

They were quickly intubated and put on ventilators. They were put on incubators and had several procedures done on those first moments of life. They did not go to my room with me. Their bellybuttons where used for their blood vessels, and I could not see my babies until I myself had recovered from the surgery. 

Since I couldn't rake the magnesium shots, my girls had a lot of respiratory difficulties after birth. They weren't the most premature babies at our NICU, but they were among those with the most difficulties breathing by themselves.

Though I knew we were going to face NICU time, nothing could prepare me for the months I had coming. No book, no testimony. I still remember the feeling in my skin. It physically hurt to see my tiny babies, so fragile, with machines all around them. Tubes everywhere.

They were on ventilators for about a week, then were on the CPAP for God knows long after that. Then, they were intubated again after catching hospital infections. Then, back to the CPAP. We became fixated on those numbers on the monitors. And I still dread to hear those alarm sounds letting us know their saturation was too low.

When I think about being a preemie parent I usually think of it with optimism. Having you child delivered too early means you are about to endure some seriously difficult times in a hospital. You will have your heart torn by seeing your little one intubated, fed by tubes instead of your breasts, kept away from you in a glass box. But you also are going to have your heart filled with joy with every little victory. And believe me, there are several little victories that make your soul rejoice.

And every little victory is like a new birth. The first time they take the breathing tube out, the first entire day with no CPAP, first day completely oxygen-free were all celebrated as national holidays. Then the eating tube came out, and I got to give breastfeeding a try for the first time, and was able to change their diapers, and they were taken out of the incubator. Each one of those moments became like this great monumental win.

Little by little all the worries about their lives and their health became only a distant past. And after exactly 58 days, we went home! And rest of our lives began.

Now I have a couple of 3-year-olds that fill my days with work and joy.

We worked hard and still do to make up for the consequences of their long NICU stay, especially when it comes to sensorial problems and respiratory difficulties. But just having them healthy and happy makes it all seem amazingly little. This is our life and we thank God for it. Every moment of struggle was only a stone in a path leading to our bliss.