Looking Back on a Down Syndrome Diagnosis 4 Years Later

This is a story I have been meaning to tell in full for quite some time, because I too was once in a position on the other side of that screen looking for advice, answers, and some way to make sense of the onslaught of emotions and uncertainty raging through me at the time. Know that this is nobody’s fault, you are not alone, many have been where you are right now, and many will be in the years to come. As of this writing my youngest daughter, Teresa, is four years old (today is her birthday) which has put me on this path for a little over four years now.

Early in 2012 my wife and I decided it was time to work on baby number two. Not only did we want there to be a couple of years between our kids, but also we are getting older and it’s best to do this sooner rather than later. Shortly after we knew we were pregnant (sorry I know some hate using the “WE” term with pregnancy) we discovered that my wife had an umbilical hernia, preventing her from lifting anything too heavy the duration of the pregnancy. Our first daughter, Kara, would be turning two years old that October which meant that all lifting duties involving her fell to me as well.

At 20 weeks we had our standard ultrasound appointment, and those who have been there know this is usually when you can discover the sex of the baby if you are so inclined. We found out we were having another girl and I was overjoyed. We can save money handing down clothes! As he was finishing up he told us to collect our things come on back to his office, which at the moment I found a little odd having been through many ultrasounds before. It was there in this small warm corner office that he told us that the sonogram revealed what were considered typical markers for Down Syndrome. My eyes lost focus and that statement just echoed in my head…Down Syndrome. He had tried to be as neutral as he could as he continued through a somewhat pained expression, like he was telling someone that their dog was hit by a car, and I did my best to listen. He mentioned we can have an amniocentesis done to be sure, as sometimes people want to know these things to decide if they want to terminate the pregnancy.

Is that what we should do? Terminate the pregnancy? What kind of life could someone with Down Syndrome live? Could they be happy not living a normal life? I started losing myself in all of these questions, these emotions, and this grief. I really didn’t hear much else that was said besides the drone of the air conditioner which grew louder in my ears, blocking everything else out. I felt my wife’s hand, squeezing mine, as it was reassuring me that we were in this together and things COULD be ok. Eventually we somehow ended up back home and we cried…a lot. I shut myself in the bedroom and cried. I asked God or whoever would listen why this was happening to us, asked how we could go on and be a normal family, and pretty much mourned the idea of a normal child and family.

My wife meanwhile went into research mode. She was online finding out everything she could about the path that lay before us while I allowed grief, confusion, and anxiety take the wheel for me. The next couple of days were a blur. I called off of work to deal with myself and process things, we met with my wife’s OBGYN, and decided to have the amnio done as soon as possible (which ended up being that Friday). We called and talked to our families and received much support in return. I still had a lot of doubt, and it was mostly in myself. Could I look at her the same way that I do with Kara? Would I be able to love her the same? Would I want to avoid my own child? Could I be strong enough and good enough to be able to deal with this and be the father she needs? Would my life be over and just spent doing therapy with her from now on?

I returned to work the following Monday, and my wife ended up meeting me for lunch. We were both anticipating what the results would be, and discussed the future. As far as we were concerned there was only one path forward and we were on it and we would do whatever it takes no matter what the results of the amnio were, but it was still something we felt we had to know now rather than be surprised by on the delivery day. Before we left the restaurant I went to the bathroom, and as I was washing my hands at the sink another gentleman came in to use the bathroom as well. The individual who walked in was a gentleman with Down Syndrome. I was stunned. I had really never before had an encounter with anyone who had Down Syndrome, and here just days after finding out my youngest would most likely be born with it I have a chance encounter with someone else who has it. He said hello and asked how I was doing, and I muttered out something in my shock about doing ok and asked how he was in return. He told me he was doing well and told me to have a great day. I stumbled out of the bathroom not sure what just happened and then hurried over to the table to tell my wife, and I kept looking towards the bathroom to show her when he came out but I never saw the gentleman again. It was such a strange serendipitous moment that still resonates with me to this day more than four years later.

The following day we got preliminary results back and we were told what we had already known to be true, that our daughter will be born with Down Syndrome. Full results to come in a couple of weeks, but they wanted to tell us this much before the 4th of July holiday that was approaching as things could get delayed due to the holiday. My wife wanted to go out to watch the fireworks and take part in the festivities just to do something normal and get back on track, and I continued to struggle with everything internally.

As time went on more issues occurred, my wife ended up having placenta previa and gestational diabetes, while still dealing with the hernia which couldn’t be operated on until AFTER childbirth. So while inside I was a mess I did my best to switch to being a rock externally. I needed to be strong for my wife and for Kara and I kept all of my fear and uncertainty at bay under the surface. We saw a genetic counselor and learned more about Trisomy 21, and what everything means, and what things we may need to be concerned about going forward common in those born with Down Syndrome such as issues with the heart and intestines.

I’m not a religious man at all, I wasn’t raised that way and it’s a bit foreign to me, but my wife is. During this time we went to church a lot and at home I prayed a lot. I prayed for my daughter to not be born with Down Syndrome at first, and over time that message changed. I started praying for her to be born healthy, with none of the defects and health conditions that could come along with it. I started praying that I could be strong enough and be the father I need to be to her and Kara. That we could be a happy and healthy family no matter what. My wife continued to research what we needed to be prepared for starting from the moment of her birth, started researching state run early intervention programs. I spent some time reading other people’s stories (much like the one you are reading right now) and just preparing myself for the man I needed to be.

November came and late at night on the 8th my wife went into labor. When all was said and done she was in labor for right around 8 hours, and barely had to push at all (in contrast to the lengthy amount of time it took with Kara at around 28 hours). It still took me a while to grasp it. We were here. We were done. The end of all of the heartache, pain, and complications we endured this year…it was finally over. I saw my newborn daughter for the first time and the weight was lifted so fast that I literally became dizzy and had to have a seat, and began feeling the onset of a panic attack. I had watched Kara come into the world, and felt nothing but joy…why was this different?

Teresa did have Down Syndrome, that much was obvious when I saw her, and I still didn’t know what to think about it. I suppose part of me was hoping the amniocentesis was wrong, that somehow she would come to us without disability, but I knew in my heart that wouldn’t happen. Looking at her I wasn’t disappointed in the fact that I was wrong, but I was more just kind of shocked that she was finally here and we were done with this portion of our journey. She was passed around from family member to family member, and with our own little 2 year old Kara not really knowing what was going on I had to make sure to focus attention and energy on her as well.

I have read many stories of this experience told from a mother’s perspective, and there’s something I want to make note of before I continue. The entire pregnancy/childbirth experience is different for a man, and while I know that is obvious to most there’s a key point I am trying to make. As the father, you don’t really feel that connection to that new child in the same way that a mother does in that moment. We never can. This child was a part of her mother, growing in there, literally connected, and sharing moments with her that I was barely even a passenger for. Sure I was there for every ultrasound and that was great, and it was awesome to feel her kick once in a while, but that is the extent of it until she is out here in the world.

It wasn’t until afternoon that I really got to hold Teresa for the first time and spend some time alone with her as my wife slept and everyone else had left the room. It was there when she was in my arms and I looked down at her that all felt right in the world. This is how she was meant to be and SHE chose to come into MY family. Teresa and my wife fought together for this moment, and the thought of that was just so powerful to me, and then all of the uncertainty and negativity going through my head the last 4 months due to her chromosomal abnormality came back to the surface in an overwhelming wave of guilt and I just lost it. I cried and told her how much I loved her and I would and will do anything for her. I looked down at her beautiful peaceful face and knew everything was going to be alright. Sure there will be challenges along the way, but we will be ready to face them together.

She was born without any of the things we feared: no intestinal issues, no congenital heart defects. She did fail her hearing tests at first, but let me tell you that girl’s hearing is just fine today! Four years later as I type this, remembering those feelings and thoughts of uncertainty feels so foreign to me. She is such an amazing girl and I am proud to be her father and I know she is destined for greatness. She helps make every single day that much more beautiful to live, and I can’t imagine being on any other journey in life than this one.

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Dan Sheehan

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Just some guy who writes things online once or twice a year.