Pregnancy

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be."
Psalms 139. 14-16


When I became pregnant in August 2011 had no idea of what was coming. It was my third pregnancy, and like the other two, I had not planned. I often say that none of my children were planned, but all were extremely desired, because I always dreamed of motherhood and was sure of my vocation. Being a mother is something very natural, easy going and I feel fully accomplished and blessed to have this privilege.

My other two children, Rebekah and Pedro are, as I say, perfect. Just a parenthesis: after Stella was born I finally learned that I don't like the term "perfect child". I say this because Stella for me, although she has a syndrome and physical differences and skills also different from most, for me she remains perfect. Perfect her way. Different but perfect.

But anyway, as not everyone thinks the same way that I do, according to what society deems "perfect", my other two children, then, are perfect. They are cheerful, communicative, intelligent, playful, each with their own personality and preferences. And they are redheads! I never imagined that I would give birth someday to redhead children, then I had already two!

By the end of 2011 the pregnancy went smoothly. Stella was growing well, healthy and inspired no concerns. We already knew it would be a girl and we were enjoying the pregnancy, registering on photos, celebrating and thinking of names for our little princess. Of course, would she be a redhead too? We spent the Christmas and New Year holidays in peace and look forward to the morphological ultrasound, that would happen in the first week of January.

At 4 months - The day we learned that a baby girl was coming - Dec 06th, 2011

Morphological Ultrasound . The beginning: plexus cysts what?!

Finally the day came for the morphological U.S. (approximately 22 weeks) and on this day, specifically, my husband Fabio could not get off work early to join me, and I went to clinic by myself with the children. In my mind, it would be like the other times, the doctor would see that all was well, my daughter was fully healthy and I would go out there happy to see his little hands, little legs, little face and stay after wondering  from whom she inherited that little nose, mouth, if she resembles more mommy or daddy ... but it was not so.

Throughout the examination Dr. did not outline any reaction that worried me. Instead, everything seemed fine. My little princess was real, was there, moving, beautiful, heart pounding. The children were curious and followed everything in the room with me, vibrating, thinking at every wiggle of Stella that she was dancing and waving to them. We were elated, jubilant, happy to see that little person so small and already so beautiful! She was on her back, and that image melted my heart, because she looked at me for shelter, hiding. She was my little baby! What a miracle is life!

At the end of the exam, I realized that Dr. was more focused on watching the little head of my baby, but I figured that, in fact, she should be looking for a better picture of the little face in 3D to show this enthusiastic mom and I asked several times if he was okay, and she said yes.

The exam was over and she gave me paper towels to wipe the gel in my belly. Simultaneously, while I was lifting the stretcher I heard a question that froze my heart: "You know that your baby has two cysts in the brain, don't you?"

Huh?! How so? I said no. She then took the last U.S. that I had done before this one with another doctor, at 16 weeks of pregnancy, turned in front of me and showed me where he described that my baby had a choroid plexus cyst the size of 5mm (0.19 in). Plexus cysts what?! Are you saying that the last U.S stated such a cyst was already there? And no one said anything to us? How I did not see that? Okay, but where exactly they are and what does this mean? It was serious? I should know? Is this normal? The room was still dark, had not even time to turn on the lights. Amidst my doubts and confusion, I looked at the boys and tried to stay calm, tried to understand, saying to myself that it was something that maybe I should not worry so much, and bluntly and with no preparation, she simply told me that this was not normal, that now there were 2 cysts and I would have to follow up to see if this would not become a hydrocephalus.

I became dumb, and did not ask anything else. I took the hand of my two little redheads, went to reception and waited there for an hour until they deliver the exam report. They would not give it to me in the same day, but I said I would not leave without him, because I needed to take that to my obstetrician. I needed to read those words, needed to understand that. I decided to hold myself and not despair. Hydrocephalus? Yes, I had heard something, but all very superficial. I remember wanting to call Fabio, but held up myself. I remember that feeling stuck in my throat. But it was not the time nor the right place. I had to stand up, I was with two little ones who don't understand anything and I still had to drive all the way back home. I needed to stay well and I decided to wait as quiet as I could.

My house has never seemed so far away! Our kids were in the back seat smiling, joking, talking and my head was still in that dark room ... Choroid plexus cysts ... Cyst in the brain ... If it's in the brain it should be not a good thing ...

As soon as I arrived at home, called my husband Fabio and calmly told everything that had happened. He was worried, but optimistic as always, he tried to support me and we agreed that when he got off the job, we would call his brother, Bruno, who is a pediatrician and would help us answering all the questions. Ok, I said and disconnected, but of course I could not make it waiting and called his brother right away. When Bruno picked up the phone I fell apart and could not speak, only cried all my restrained crying. Little did I know it would just be the first of many times.

Ventriculomegaly x Hydrocephalus

Our brain is composed not only by supporting cells and neurons, but spaces filled with a liquid called cerebrospinal fluid (CSF). This liquid runs between the layers that cover the brain, brainstem, cerebellum and spinal cord (meninges), but it is produced within the brain itself in cavities called ventricles.

Hydrocephalus is defined as an excessive accumulation of CSF, accompanied by excessive growth in head circumference while Ventriculomegaly describes the increase of cerebral ventricles, without increasing head circumference. The ventriculomegaly may or may not evolve into a hydrocephalus.

Stella started presenting ventriculomegaly, in very simple terms, she had an excess of fluid in her brain and this fluid was making the ventricles grow, but the size of his head was like a normal child. Dr. Guilherme always told me this: "When she born, you'll look at her and you will not see anything different in the size of her head. In appearance she will be a child like any other!" Of course those words never put me at rest.

Stella began with a mild ventriculomegaly, 11mm (0.43 in). Three weeks later she went to a moderate ventriculomegaly, 15 mm (0.59 in). Then she went to 17 mm (0.66 in) and finally, only a week before her birth, she had severe ventriculomegaly, 19 mm (0.74 in).

But according to Dr., it not evolved into a hydrocephalus. That is, her head was of normal size. The problem was not it outside but it was inside. Regardless, this was something that bothered us and  made us very sad.

Anyway, we arrived at 37 weeks, almost 38, ready for my third c-section (it is very common delivery procedure in Brazil). At this point, my husband and I had already read all about ACC, ventriculomegaly, and prognosis that we even felt kinda of well prepared for the future with our little princess.

Even though anxiety was huge, we arrived at the end of pregnancy with the strong conviction that Stella was handmade by the Lord according to His plans, and if she was delivered to us, the Lord Himself would enable us to take care and love her. Our friends and family were worried and praying with us and our relationship with all of them was deepened during this period. We feel cared for and loved by everyone. How many times we cried and prayed together! Only the Lord knows how much we have been blessed by these precious lives and how much love they dispensed to us, and warmed our hearts in the desert of our fears.

Overall Stella was going very well, the tests did not detect any other malformation. Her kidneys, lungs, feet, hands, heart, all you could see was perfect, was working fine. Weight and size appropriate. And the hair, target of all bets, it was already possible to be seen the images. She would be another redhead? Off we went to find out!!

2 days before our little Stella arrival... photo by Silvia Barbi 

“Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the LORD, I will be joyful in God my Savior.

The Sovereign LORD is my strength; he makes my feet like the feet of a deer, he enables me to tread on the heights.”

Habakkuk 3:17-19