The following is not an opinionated fuelled lecture about the rights and wrongs of prenatal testing for syndromes or conditions of the unborn baby.It is based on my own experience of my own particular situation. It certainly is not a one shoe fits all analysis. There are many uncomfortable shoes which I have never walked in and could never know the pain that was endured in every step which was taken in them. Everyone is different, every situation is different. Therefore everyone should have a choice that is right for them. Informed decisions are made when we listen to different experiences and rational debate. Here I will share my opinion of why I will always be grateful for getting to meet OUR baby first and not a Google version of a “Deaf baby.”
I have heard a lot lately about various prenatal tests which are available, particularly from pregnant friends who live outside of Ireland. It is mind-blowing how much we can learn about our unborn babies in the early stages of pregnancy. I assume because of our laws here many tests are not offered as part of our prenatal care, because what are the options if the results are not as we expected? What do parents-to-be do with this information? What is the point if options are limited? I assume parents go ahead with tests because it “prepares” them but I wonder are we ever really prepared for the unthinkable no matter how much of a warning we get? Or do we all adopt the “it will be fine it won’t be us” attitude and are just looking for confirmation on what we think we already know?
Although Forrest Gump was a fictional character he spoke a lot of sense, as “life is like a box of chocolates you just don’t know what you gonna get next” and that is what pregnancy is all about. You can never stop taking it for granted that a healthy baby with ten fingers and toes is a miracle which takes more miracles for that baby to arrive into the world. From the moment of conception up to the moment they are placed on the outside of your skin, it is out of our control what we get. Therefore I wonder what benefit it is to know so much about our babies before we have to? In my own case, there would have been absolutely no benefit and I am so grateful there was never an option. Our journey started after we met Eoghan and he is the lead passenger so it was only right we waited for him to arrive before we started off on our adventure.
I was the person who never found out the sex of any of our three children. Each time I was asked and was happy to wait. I believed that there were few nice surprises in life and not knowing if it was a boy or girl added to the excitement. After two boys I was not shocked that the third was also a boy. However the shock was to follow a few days, weeks and months later. Why would anything go wrong , I was 33 and having my third child. I was the annoying person who sailed through pregnancy, had three natural, drug free births and I was never sick for one day of the 121 weeks of my life that I was pregnant. What would ever go wrong with a text-book person like me? I never had reason to ever ask for any test. I trusted the care of the medics and ultimately I trusted my tried and tested reproductive body. None of that was a guarantee. BANG, It all took a new turn and life changed. I know that no matter how prepared you think you are, you are never prepared enough to deal with being told that all is not as it should be as you hold your new-born baby. To know that something maybe wrong with your baby before you get to meet them does not take the pain or sense of loss away. However I am so grateful that there was no test which I know of that could have told me that my baby was profoundly deaf.
I have come to this conclusion for many reasons and they are as follows:
My pregnancy Experience
I was fortunate to have had a wonderful pregnancy. My little boy moved and bounced much more than the others. He was in complete silence and darkness and the movement gave him comfort and a sense of being alive. After I found out about Eoghan’s hearing loss, i relived every moment of my beautiful pregnancy trying to find a cause for his deafness. Were there things I had done wrong? But i could not find anything but happy memories. This gave Eoghan a time, a history of being just a baby nothing else. After Eoghan’s diagnosis i would get so sad thinking about the silence he was in, inside my womb and all the things I would say to him that he never heard. But the thing is I was never sad or worried while we were attached together and although he did not hear my words he felt my joy and complete calmness. If I had known about his hearing loss would I have been able to nurture him with the carefree love or would my worry and anxiety for the unknown have taken over.
If there is a concern with your baby it takes a very strong person to keep it from family and friends and the natural instinct is to inform them as soon as you find out. We were fortunate as we got to introduce our baby to the world first and not his condition. After Eoghan’s new-born screening had failed we waited a few weeks for the full diagnosis of his loss and we had kept the big come out of his condition until then. Those weeks felt like months.In the meantime everyone met Eoghan,got to know the real Eoghan for the beautiful baby he is. They looked at him and cooed over him, they didn’t cry. But then when we got the diagnosis while he still had the smell of a new-born; the coos turned to tears and questions were asked “is there anything else wrong with him” It hurt because all that many people could see was the “wrong” and all i could see was the perfect. Therefore I am grateful that the world viewed Eoghan as I do every day for those few weeks as whole and perfect. But once a baby has an“issue” it is the sticker that sticks and the fight is making the world view your child as you do, as a little caterpillar that will turn into the most beautiful butterfly.
Once your baby is diagnosed either from the inside or on the outside, they become a medical baby. Straight away a program is put in place and your relationship with your baby is dictated around appointments and the additional care. Every time he has an appointment I am grateful for the dedication and attention which he is receiving. I have never met such amazing people as I have done on this journey. But while I was pregnant with my”non complicated baby” I had him to myself and was able to nurture him with my own instinct and not under strict medical surveillance. We had a history of a time when it was just “normal”
Don’t Grow a Google Baby
I was fortunate that I did not spend my pregnancy on Google researching what my baby was going to be like. I imagine that if I had been told this while pregnancy this is exactly what we would have done. This is what we did as soon as we got his diagnosis and we were experts on hearing loss within a week. I had a real baby to look at and did not have to have additional sleepless nights (there was enough of those ahead) worrying about things I did not have to worry about. If I had know about the diagnosis during pregnancy there was only so much information we would have had and would have had a long wait until he was born for further tests. It is one of the greatest pains of parenthood to feel helpless and to be unable to do anything for your child. Googling things which may never relate to your child adds to the agony and uses up physical and emotional energy which will be needed when your precious baby arrives.
Life is long and nothing prepares us for what is a head. We may have wonderful pregnancies, easy births and healthy babies but it does not stop there.For example no one can predict what the toddlers to the teens years will be like. At times ignorance can be bliss particularly when we have no control or ability to aid a situation. My third pregnancy was one time I was happy to be ignorant. However every morning I wake up and I am grateful for the new-born hearing screening. I am grateful for timing and our timing was right because there was a plan ready for Eoghan.I did not feel helpless as I had a baby who needed me to help him connect with the outside world. As his parents it was not our job to set up all the hurdles. However it is our life mission to jump as high as we can to get Eoghan over them and know there are no limits. But each hurdle can only be jumped when it is in sight not anytime before. We must try to live for the moment and enjoy each stage while we can. Stages of pregnancy and their precious lives which we will never have again
He was born Our Eoghan, the perfect baby that came into our world and was not born as a preconceived conception of a Google version of a “Deaf baby.”