Chapter 2: First visit to Seattle Children’s Hospital

What I remember most about our first appointment at Seattle Children’s Hospital is the word, “And.”

Our appointments there were divided into 2 separate days – genetic counselors and perinatologists on Wednesday, and pediatric cardiologists with fetal echocardiogram on Friday.  We met with the genetic counselor, who went over our “risk factors.”  It turns out, we really didn’t have any, but she strongly encouraged an amniocentecis anyway.

Now, you have to understand that being strongly pro-life, I had always been very much against prenatal testing, with the amniocentecis being the biggest evil of them all.  “Quad screens” are so inacurate, that they lead to many terrified women going through an unnecessary amniocentecis procedure – a procedure that is deemed “safe,” but is a procedure nonetheless and is not without risk.  And, what do you do with the results of an amnio?  You basically have two choices: to abort or not to abort.  In my mind, amniocentesis was responsible for many, many abortions.  I, Amy Vawter, would never have an amnio, and I told the genetic counselor so.

Then came a very long, very detailed ultrasound.  When the doctors sat down with us to discuss their findings, it felt as though a bomb was dropped right in our laps.

And they kept saying, “and.”

We sat in silent shock as the doctors outlined one very major problem . . . then said “and” . . . and discussed the details of a completely different but every bit as major a problem.  I just wanted them to stop.  Stop saying “and.”  That’s enough.

Our baby had:

• Enlarged ventricles in his brain

and

• Fluid around both kidneys

and

• Both of his feet were club feet

and

• He was significantly small for gestational age

and

• I had too much amniotic fluid

and

• He had shorter than normal long bones and missing nasal bone, and some other markers for a “syndrome.”

and

• Severe heart defects, but we would know more on Friday when we met with the perinatologists.

They were quick to offer an abortion.  When we said, “no,” they recommended an amnio.  Why?  Because then we would “know.”  I didn’t see why it mattered at this point – this poor little guy had so much stacked against him, what difference did his chromosomes make?  They said if he lived to be born, (which was unlikely,) we could have some tough decisions to make.  Through my tears, I managed to communicate that I still didn’t want an amnio.  It just didn’t feel right.  I didn’t believe in amniocentesis, remember?

Then the doctor explained more about why we might need to “know.”  She said babies like this often require heart surgery or other major interventions immediately after birth.  At this point, it looked like he had a “syndrome,” but they couldn’t tell for sure, and they really didn’t know if it was Down syndrome or another trisomy.  If his chromosomes were normal, his prognosis would be much better and he would be more likely to do well with surgery, whereas if he had Down syndrome he might struggle more.  If he happened to have another trisomy, such as trisomy 18, he would not have any chance of survival whatsoever, and we would probably want to choose comfort care over surgical options.  There could be decisions to make right away, doctors and surgeons might need to know right away, and results of chromosomal tests can take up to a week.  We might need to know.

After Aaron and I had a chance to talk alone, I reluctantly agreed to the procedure.  I had come to see that “knowing” wasn’t just for our benefit or our own peace of mind, but could actually be a key piece of knowledge in making the best medical decisions for our child.  I would never have an amnio just for me, but I could do it if the benefits for the baby outweighed the risks.  (This was the first of my “hard and fast rules” that I broke with Matthew, but it wouldn’t be the last.)  They could do the amnio that afternoon, and we might even have preliminary results by Friday when we met with the cardiologists.

Aaron left the room while they prepared me for the surgery.  While he was gone, they reminded me that this was “my body, my decision,” and that I should go ahead with an abortion if that’s what I wanted to do.  After all, I was the mother, and I shouldn’t let my dear, faithful, and loving husband – the baby’s father – influence my decision if it wasn’t what I wanted.

I cried silent tears through the whole procedure.

. . . . . . . . . .

We took Micah to the zoo on Thursday.  I think he had fun looking at the animals while Aaron and I walked around in a shocked fog.

. . . . . . . . . .

Friday’s appointment with the pediatric cardiologists revealed our baby had heart defects that were more complex than any I had ever heard of, including a “Complete atrioventricular canal defect”  (See the “heart stuff” page, but basically a huge ASD, a huge VSD, with the mitral and tricuspid valves fused into one common, leaky valve) A hypoplastic left heart, and a gross coarctation of the aorta.

By the time the doctor had given us a diagram of his heart, outlining all the problems, the picture didn’t even look like a heart anymore.

The cardiologist then began to outline the series of 4 open-heart surgeries that would attempt to fix this little, broken heart.  The first surgery would have to take place within his 1st week of life to re-build his aorta.  As soon as he recovered from that, they would begin the process of surgically designing his heart to function off one, single ventricle – which would take 3 more open-heart surgeries.  The prognosis?  Not good.  Especially bad if he had Down syndrome.  We asked for numbers, and were told that there had been 10 or so babies with hypoplastic left heart and Down syndrome at Children’s in the last 8 years.  None of those kids made it.  The surgeries might extend his life by 2-3 years, but they had not had any success beyond that.  And those were kids without the aorta and canal problems.

. . . . . . . . . . . .

As we were driving home that afternoon, the call came.  The preliminary amnio results were back.  Down syndrome.  That’s when Aaron lost it.  My strong husband was a weeping mess, and had to pull over.  We both cried and hugged, and cried some more while Micah slept through it all in the back seat.  I drove the rest of the way home, where we began the painful process of calling friends and family members to give them the news – our baby was not going to live.

. . . . . . . . . . . .

Sometime the next week the phone rang.

“I called to let you know that the final results of the amniocentisis are in.  It’s a boy, and he definitely has Down syndrome.”

“Thank you.”  (What else do you say?)

“It’s not too late to perform an abortion.  There’s really no need for you to go through the rest of this pregnancy if you don’t want to.”

“No.  No abortion.”

“I know you have moral objections to abortions, but we could schedule you for an early induction if you want to.”

“What do you mean?”

“Well, if we induce labor within the next couple weeks, the baby would be too young to survive but you wouldn’t have to endure the rest of this pregnancy.”

“That’s the same thing.  No thanks.”

“Well, we should probably see you again in 8 weeks for follow-up then.”