My First Triathlon

Ok so you're probably trying to figure out what my first triathlon could possible have to do with Molly? It sort of ties in to the previous post, which I believe I started by posing a similar question. The answer is also similar: THERAPY.

Also mentioned in the previous post is disdain I had for turning 30. I have since gotten over that - you know, perspective and all. But what that did was turn me on to a whole new form of exercise. Actually even before that, my friend Cyrus, a diabetic, convinced me to ride in a charity bike ride for the American Diabetes Association. I didn't even have a bike and the ride was 30 days away. So I bought a bike and started pedalling. When the ride was over I was looking for something to keep me motivated (since in the back of my mind I knew 30 was coming). I decided on triathlon.

Looking back I have no idea why I didn't just keep riding my bike? Why add two more sports? I was never a fan of running, and I couldn't swim more than 25 meters without resting. In hindsight, the idea never should have gotten off the ground. But it did.

I started training in the winter. In February. Coincidentally, a few weeks into training we got Molly's diagnosis. At this point there were a lot of things on my mind, and a lot of things on my plate. The first decision I made was that I wanted to spend as much time as possible with Erin and Gavin. The second decision I made was that I wanted to go through with the triathlon. I knew that in order to do those two things I would have to give a couple things up. That's when I decided to take a leave of absence from my duties as a volunteer firefighter.

Well after I got squared away with my time management, a funny thing happened: I began to look forward to training sessions. Instead of a 2 mile run that I could get done in 15 minutes or so, I started to go on 5 mile runs that took closer to 45 minutes. Sometimes I'd break up the run with a brisk walk that would drag it out to more like an hour. Bike rides easily climbed in to the two hour window. And I was going to the gym six days a week often times. These sessions gave me time to think. They helped clear my head. And they often made me feel better.

So finally, today, I completed my first race. I only slept for three hours last night, and that will likely be printed in the Trenton Times tomorrow, since my wife told a reporter. But I got there bright and early this morning, ready for action. My goal was to finish. My secondary goal was to finish in less than 90 minutes. I crossed the finish line at 1:26:59, and immediately felt a sense of accomplishment. It even choked me up a bit to see my very pregnant wife, and very excited son at the finish line, cheering me on. They are my motivation, and my support system, and I wouldn't have even gotten out of bed if not for them. Not just this morning, but most mornings. And they were really happy for me.

It didn't take long for me to start talking about how bad my time was. And how much better I was planning on doing next time. I just need more therapy.

A Golf Outing

How is a golf outing relevant?

Today was the 1st Annual Emma Marie McCabe Golf Classic. This event was organized by a family who lost a child last fall, to the same disorder we're currently preparing for. October 3, 2005. Those of you who know me well may recall I was preparing to turn thirty and not taking it well. How incredibly ridiculous of me! This family was coping with the loss of a child who had only been born three days earlier, and I was complaining about a number. Perspective is a funny thing.

But here is something else: October 3, 2005 was less than 10 months ago and these parents are out and about, socializing, functioning, thriving. Their grieving, of course, but they're ok. I have no idea how we're going to handle this experience. I have no idea what's going to happen with Molly once she is born. We don't anything. Every day from now on has more of a question mark than any previous day. But now, after seeing Emma's parents up close and personal, I do know this: we will get through it together.

The golf outing was organized to benefit the Trisomy 18 Foundation. I learned about the event through the newsletter you receive from the Foundation as a member. Erin and I became members right after learning of Molly's diagnosis. I can't begin to articulate how helpful this site has been. At the beginning it served as a place to learn, then it became a place to share, and it will eventually become a place to heal. For Erin, the access it affords to other mothers with similar experiences has been an invaluable resource. The message boards and support group has been her main source of therapy. And it's been a huge help.

If anyone is interested, I encourage you to visit the site. You can learn how friends and family can help. You can sign up to receive a newsletter. You can donate to the cause and insure that this site will exist for the next family that needs it.

Also, an enormous thank you to the friends, family and co-workers who participated in the event today. Despite the heat at first, and the subsequent torrential rainstorm and accompanying thunder and lightning, the event was a huge success. Fourteen people played golf as part of the "Sean Brown" group, which became a big joke at registration as all 14 were registered as me. And one additional person joined us for dinner (which actually ended up being a small gathering at Conte's while a few of us die-hards closed down the golf course). I hope you all had a good time, and realize how important it is to Erin and me that you were willing to be part of it.

Things That Help, and Things That Don't.

We're currently on a vacation that originated solely to get us some time away from day-to-day and all that entails. It's been relaxing. It's given us time to think. It's given us a chance to be together, just the three of us. We've spent the mornings alternating between walking slowly on the beach and running maniacally down the beach trying to wear out Gavin. It's too cold to actually "go to the beach," but it's a nice place to spend some time.

Between the 12 hour drive and the down time on the beach, we've spent a few minutes discussing the subject that serves as the title of this post. We're going through a very difficult process that most people are not able to comprehend. Before the doctor said it to us, we'd never heard of Trisomy 18. We don't have a lot of friends who have lost children. We don't hang out with therapists. So it's not unusual that in casual communication people find themselves at a loss for words.

There is no guideline for what helps and what doesn't. But there are certainly things people can say and do that will help. And conversely there are things people can say or do that won't. In a previous post I linked to this site. There are some good tips there.

Rather than list a bunch of things that do or don't help us cope with what we're going through, it may be more useful to direct people to this page (same site, different page). Check it out if you're curious.

In the meantime, remember this: the fact that you recognize that there may be something that does or does not help shows that you care. Caring is what we need most. Just making an effort means a lot.

"We" and "Us"

If you've been reading the previous posts, you've noticed that they're all published by me and thus written in my voice. You may have also noticed I refer to "we" and "us" when discussing the decision-making process and/or the status of the pregnancy.

I think it's clear to say everyone recognizes that I am not actually carrying the baby. People may also be wondering how much input a person not carrying the baby can have on the decision.
This is an incredibly strange position for a man to be in. All the fathers out there can identify with attempting to sympathize with their partner while she does all the hard work: gaining weight, losing sleep, having their body taken over, not to mention actually delivering the baby [if you've only witnessed child birth through the "real-life" movie they show in Health class, you have no idea. The nurse's insisted on putting a chair behind me during delivery because it's not unusual for dad's to pass out. Fortunately (or unfortunately) I've seen worse and was at no risk of passing out. Some of you out there - and I have a few of you in mind - make sure you know precisely where that chair is because you'll need it]. With any pregnancy there is a fine line between identifying and annoying. As they get more pregnant, they get more irritable, and it's perfectly within their rights. This is when you need to be careful, as a man.

The point here is this: I recognize that I can't possibly know what my wife is feeling just being pregnant. There is no way I can attempt to know what she is feeling as she carries a baby with a potentially fatal condition. My goal in this process is simply to identify and support. I hope I am doing a good job.

And as for the decision-making process, for the curious, I went full-circle. Erin knows this now so I guess I can share it. Mt first instinct was to end the pregnancy at diagnosis. I didn't share this at the time. After countless conversations with Erin, where my sole intention was to present both sides of the decision, I decided that what I really needed was to meet the baby. Erin decided this for herself as well. Sitting back and letting Erin decide was always my intention, I only offered input when asked. In the end, it's just fortunate we both saw things the same way. It made an incredibly tense time in our lives more manageable in that we had no tension between us.

Thank You, All.

We can't thank you all enough for the genuine care and affection you have shown us over the past several days: The replies we received to our email of March 18, the phone calls, the visits, all of the kindness people have expressed, we can't thank you enough.

It's only going to get more difficult for us as time goes on. We can only hope everyone continues to be so supportive.

Making a Decision

We talked to a lot of people. We asked a lot of questions. We read a lot. Gathering information, hearing experiences, and getting opinions was helpful, but it certainly wasn't going to make a decision any easier. In fact, it didn't do anything for the decision. That's not meant to say we didn't value what we learned, it just, in retrospect, had no impact whatsoever on our decision. Ultimately we made that call based on our opinion of ourselves.

My mantra throughout this process has been, "No matter what you think you'll do in a given situation, you have no idea what you'll actually do until you have no choice but the make the decision." We had no choice but to make the decision and it ultimately had to be made based on what we needed to do to move on with our lives.

For both of us, after much deliberation, what we needed to do to move on was meet the baby.

Our options are limited to begin with, but determining we want to meet the baby narrows those options to two: induce before 24 weeks, go through labor, and deliver a premature baby with little chance of being born alive; or carry the baby as long as possible (hopefully to term) and deliver what we hope to be a viable baby. In those terms, for us, the decision was clear.

Tonight we met with a doctor who specializes in delivery of sick babies. It seems he was under the impression that our decision was for an induction in the next few days. What we actually wanted to do was discuss our options with one additional doctor. After a brief, late evening meeting in Cherry Hill, we had finally come to an absolute decision. Carry the baby to term.

We decided that we wanted to let nature take its course and, if we're lucky, we'll get to spend some wuality time with our baby. For us, as soon as we made the decision to carry the baby to term, we could start spending time with her [the doctor in Cherry Hill was actually the first person we asked to tell us the sex of the baby].

Tonight, on the drive home from Cherry Hill, Molly Elizabeth got her name.

A Note to Our Friends...

After a few days of alone time and a great deal of reflection (not to mention a too-long-not-to-be-noticed absence from work) we've decided to send the below email to our friends and family:

Friends,
Please let me apologize in advance for providing this information via email, but I need to ask you all to respect my desire to avoid discussing this repeatedly. Erin and I are tremendously appreciative of the support we've received thus far. I'll attempt to bring you into the loop and express my sincere gratitude for all of your kindness.

This past Monday we had a comprehensive ultrasound and an amniocentesis. The results of the amnio revealed that the baby has an additional chromosome #18. Trisomy 18, the name of this particular chromosomal disorder, is quite severe. Among other things, the ultrasound also revealed a ventricular septal defect: an opening between the lower chambers of the heart which prevents the heart from pumping blood correctly. This particular chromosomal abnormality combined with the severe heart defect (which is not an unusual symptom of Trisomy 18) create what our doctors consider a lethal condition.

Again, I apologize for sending this in an email; it's just easier than talking about it. I promise to try to keep you all informed.

The support of our friends and family will get us through this. Thank you.

Sean and Erin

In retrospect, we should have been more clear on a few points. 1) If you have questions, please ask us. It's not that we don't want to talk about it, it's more that we don't want to explain the scenario over and over again. 2) Please act normal. It was difficult enough to handle the news on its own. This discomfort was compounded when it was clear there were people who thought it better to ignore us completely, than say the wrong thing.

I can certainly respect this. Here is what the Trisomy 18 Foundation recommends.

Meeting with the Genetics Counselor(s)

Per the doctor's request, we headed up to the hospital. It wasn't our normal hospital, and the doctor we were going to see we only knew from the ultrasound and amnio from the previous Monday. So the 45 minute drive was quiet and unnerving. We knew what I had been told on the phone, and what we had learned from a previous meeting with a genetics counselor, but aside from that we knew nothing.

You've all been to the doctor. It seems that no matter where you go or why you're there, you wait. This was no different. We were told to come as soon as possible. We were told there was bad news. We still had to wait.

The genetics counselor came out to get us and informed us the doctor would join us after we talked for a bit. She introduced herself - since we had met with a different counselor previously - and she introduced the trainee who would be sitting in with us.

We went into a room that was way too small and, with four people, was over-occupied by about two people. We're about to receive a full explanation of the news that will forever change our perspective and it's being delivered by a stranger with a trainee lurking in the background. The doctor joined us later and made the room more crowded and just as uncomfortable.

I mean as hard as you try, is it plausible to envision a scenario where two complete strangers and a person you've met once before can see you at your most vulnerable and emotionally devastated and manage to make you feel comfortable?

This meeting was where we learned how severe the condition was and where we realized we were not preparing to cope with a disabled child, but more likely losing a child.

The Phone Call and a "Defining Moment"

Typically when someone has what they describe as a "defining moment" it's something inherently positive. Actually that's not true. More accurately, up until this point in my life I have been storing up these moments as positives. That all changes today.

At about 3 pm I received a call on my mobile. The voice on the other end was the doctor from our Level II and he said simply, "Is this a good time to talk?"

I've been around long enough to know that this is not how any good conversation begins.

Doc - "We've received the preliminary results of your amniocentesis and your baby is positive for Trisomy 18."

Me - "That's the more severe, isn't it?"

Doc - "Yes it is. We'd like you and your wife to come in to our office at Robert Wood. How soon can you be here?"

Me - "I have to get my wife from school and then head up there. We can be there by 4 pm."

First I called her mobile and told her she needed to leave school and meet me at my office. I told her we'd need to drive up to New Brunswick. I hadn't told her why, but she never questioned it.

She was outside my office within ten minutes. When I got in the car I had to tell her what I had just heard from the doctor. I will never forget the look on my wife's face when I told her. Nor will I forget her words that will pierce my ears forever, "why is this happening to me?"

Amniocentesis

An amniocentesis (amnio for short) is an invasive test that prenatally determines the chromosomal makeup of a baby. We passed on one early in the pregnancy because we were fairly certain we wouldn't change anything regardless of the results.

Well after the doctor finished the anatomical scan and explained what his concerns were, we were asked once again if we wanted to have an amnio done. The doctor did not recommend that we accept or decline, but he did offer some information we were in no way prepared for.

For the first time, we were forced to consider the possibility that this baby had Trisomy 18 - a considerably more severe disability than Down Syndrome (Trisomy 21). Some of the concerns the doctor was seeing on the ultrasound were: choroid plexus cysts on the baby's brain measuring larger than normal, fingers that overlapped one another, shorter measurements of longer bones, and most concerning - a Ventricular Septal Defect : A hole between the lower chambers of the heart which prevents the heart from pumping blood correctly. All of these things, we were told, were consistent with a chromosomal defect. At this point, we decided that we needed to have the amnio.

The test itself took only a few seconds. Neither of us watched the needle - just the monitor where the baby was still on the screen. We were told the results would take a few days.

Level II

Today's Level II ultrasound was planned weeks ago. As I've mentioned, there were some early markers that had us concerned about a potential chromosomal abnormality, but our last scan was good and our demeanor was positive. Right up until we walked into the room we were discussing "the big question".

"So do you want to know?" asked the technician, as she began her scan.

Yes. We both wanted to know the sex of the baby.

The ultrasound was comprehensive, and the technician was focused. She spent one hour (almost to the minute) scanning from every possible angle and carefully examining many different things. When she got up to leave the room she said, "The doctor will need to get a good look at the heart, so please make yourself comfortable. I'll also let him tell you the sex."

Thinking back, I am not certain why we weren't worried at that point?

When the doctor came in he went right to work. His scan was as intense as the technician's, yet he wasn't really talking to us at all. Finally, after another 30 minutes or so, he said, "I'm going to tell you about what I see because I know my silence is killing you. I do have some concerns."

That was the exact point at which everything changed with this pregnancy.

What we were thinking after Ultrasounds 1, 2 and 3

Between ultrasounds 2 and 3 were were extremely concerned. We did, however, remain positive. With our first child we didn't have an ultrasound until week 20, so we were of the opinion that we should try not to worry until we were told to worry. Nonetheless, we knew there was the possibility that a chromosomal abnormality may exist, and we privately began to consider the chance that we may have a child with Down syndrome.

While we were given the option of an amnio after ultrasound #3, we turned it down. We figured there was little to be gained: we weren't going to terminate the pregnancy, we were somewhat reassured by the most recent results, and we thought that risk of complicating the pregnancy was actually greater with an amnio. We were also told that the Level II ultrasound would likely pick up on any anatomical markers of Downs, and that the echo would identify heart defects.

In the first few days following ultrasound #3 we considered all of these options. After those few days passed, we moved ahead assuming all was well. In fact, right up until the point where we entered the room for the Level II, the thought taking up the most energy in our minds was Do we want to know the sex of the baby?

What we learned from Ultrasounds 1, 2 and 3

Early on in our pregnancy we had an ultrasound to help estimate a due date. In that scan the doctors identified a blood clot on mom. A follow-up scan was scheduled to be done at the hospital two weeks later. In that scan the doctor determined the blood clot was still there noted an increase in the size of the fluid behind the baby's neck. The measurements were above the normal range, however, the pregnancy was only in its 10th week. We were asked to return 10 days later to get within the 11-14 week timeframe, when these measurements are normally taken. We were also told that we should meet with a genetics counselor following that scan as an increased nuchal translucency is a common "marker" for chromosomal abnormalities such as Down syndrome.

When we returned for the third scan, the clot had resolved and the measurement of the fluid behind the neck was within normal range. At this point we were somewhat reassured. We met with the counselor and she laid out all of the facts concerning chromosomal abnormalities, and explained what the results of all three scans could mean. While what we heard from the counselor was upsetting, the measurements from this most recent scan gave us hope.

We were asked to consider an amniocentesis within the next two weeks, and to schedule a Level II ultrasound (also known as an anatomical scan) at 20 weeks and a fetal echocardiogram at 22 weeks. We decided against the amnio (for a number of reasons, which you can read about in the next post) and made appointments for the other two tests.