Diagnosis: Large Encephalocele
By Rohan’s Mother
August 9, 2001 was a day my husband and I anticipated for weeks. It was circled in thick black text on the calendar, and we counted down the days. You see, that day was the day we would see our precious first child for the very first time on screen. Like most first time parents we had discussed the possibility of our child having a problem and what we would do, but with the naivety that comes with being young, newly married, newly pregnant and very blessed, we thought bad things happened only too others. How wrong we were.
We had decided early on to find out the sex of our child at the ultrasound and it was this that filled our minds as we sat in the waiting room. We handed over our video to the sonographer at the start of the ultrasound and watched in amazement at our baby being revealed to us on screen. Spine perfect, heart perfect, very active, lovely limbs. We giggled as the bub scratched its nose and rubbed it ears. The sonographer asked if we wanted to know the sex and then announced with 100% assurity we were having a boy.
My mind filled with images of our son – our Rohan. I looked tearily at my husband and we squeezed hands. After that things seemed to go quiet. Never having had an ultrasound I do not know if this was normal, but the sonographer spent ages taking measurements and pictures. She announced she needed a second opinion on something, but reassured us this was not unusual and left the room. I was still on cloud nine and never even suspected there could be a problem. My husband was a little wary.
The sonographer came back with another woman who began looking at pictures of Rohan’s head. It was then that I saw a weird shape on the screen and asked what I was looking at. Both women seemed preoccupied then one looked at me and simply stated “this doesn’t look good, I’m afraid your baby has a large abnormality.”
I still cannot described how I felt at that point. I sunk into shock that makes everything seem so surreal when looking back on it. I just remember clutching my rounded belly in my hands and weeping for my poor baby, knowing he would die and there was nothing I could do to help him.
After a long wait, a doctor finally came in to explain what was going on. We already knew from the expressions on the sonographers faces and their comments, that the outcome would not be good.
The doctor explained that our son had a large encephalocele. This meant that when Rohan’s skull had formed, it had not closed over, leaving his brain room to billow out. It was an extremely large abnormality and an operation would not fix it. If born alive Rohan would suffer from severe physical and mental handicaps and would probably die soon after birth. Our options were explained. We could either carry him to term or schedule for an induction. We decided to book it the next day.
I wonder now if we made our decision to hastily, but at the time I was so frightened of the next 24 hours. Up until then I had yet to feel the baby move and I was so afraid that I would feel him flutter for the first time and rather than feel the miracle of his life within, I would feel only the pain of losing him.
We checked in the next day at 9:00 a.m. and were given a private room at the end of the labour ward. I was started on the first round of tablets at 1:00 p.m. 24 hours later, still nothing had happend, and I was given a 24 hour break from the medication. Many people express sympathy at hearing how long Rohan took to arrive. My husband and I find peace in it. It was during the long sad wait that we feel we came to truly know our beautiful baby. We feel he took so long because he loved us so much he didn’t want to go.
The next round of medication began the following day at around 7:00 a.m. I felt minor cramping and was given an IV of ventonil (similar to morphine) which was self-administered. Hours crept on and finally around 2:00 the next morning, contractions began in earnest. My wonderful mother and beautiful husband took turns sitting up with me, breathing with me and massaging my back. The contractions gradually picked up in intensity and duration and at around 4:30 my waters burst, waking me from a short sleep.
Rohan was born at 8:47 a.m. on August 13th, 2001, weighing 280 grams and measuring 25 cm long. We held him in our hands and kissed his perfect little hands and his beautiful little feet. We had both been so frightened of looking at him, not knowing what to expect, but while his abnormality was large, it was part of him and therefore was not horrible. He had my chin and his daddys brow, and looked a lot like his uncle (my brother) had as a baby. He even had perfect little lines on his palms and pale little brows and eyelashes. We took photos and passed him around and then said goodbye.
The next day we held a blessing service for him in the hospital, before leaving with arms full of flowers, hearts full of sorrow, and no baby. The days that followed seem so surreal when I look back now. I don’t know how I made it through without going insane. I felt so empty. I did not know who I was. I was no longer a young naive woman who loved a glass of red wine and a few smokes, yet I was also no longer a pregnant woman who had a baby to think of. It took weeks to create a new self for me and not feel strange about every situation I came to.
The urge to have another baby immediately to fill up the huge void I felt was enormous. I felt if I could just get pregnant again, the pain would go away and I would have something to focus on. This feeling has lessened slightly with time, but I still know that despite the advice of doctors who suggest a three to four month wait, we will try again as soon as possible.
If there is one thing that Rohan has taught us, it is to not waste a moment of our lives. In the past we have planned our lives meticulously and expected that things would come to us because we wanted them when we were ready for them. We now know how foolish we were. We did not deserve things just because we wanted them. Children are a gift from God and such a gift should never be taken for granted or as a given.
Our darling boy Rohan ~ the dear little angel who blessed us all. Mummy can’t wait for the day she will hold you in her arms, squeeze you tight, and feel you warm little body against hers. Until then my darling, cuddle close to Grandma and Grandad and feel all of the love I am sending up to you.