Happy Birthday, Miracle Baby

I’m sending birthday wishes to my older daughter, who celebrates her birthday today.   There’s a reason I call her a “miracle baby.”  I’ve written that my first husband, Rich, suffered heart failure when he was just 27.  He was sent to Johns Hopkins Hospital in Baltimore to find out why such a young, otherwise healthy, man would have CHF.  We learned from his echocardiogram that his heart failure was brought on by a malfunctioning aortic valve.  He also had cardiomyopathy, an enlarged heart.

While we were there, a genetics specialist came up to examine Rich.  We were very surprised but cooperated.  Rich answered questions about his health and allowed his limbs to be measured.  We were puzzled when Rich was asked: do you have stretch marks in unusual places?  He did—all over his shoulders and upper arms.  Are you double-jointed?  Rich demonstrated he was.  Have you always been *that* near-sighted?  Yes, since childhood.  We were mystified.

The doctor had another surprise for us: he told us he believed Rich had Marfan Syndrome, which was a disorder of the connective tissue.  It could affect the eyes, lungs, heart, and skin.  People with Marfan were generally exceptionally tall (Rich was 6’6”), double-jointed, and had stretch marks in unusual places on their bodies.  We sat there with our jaws dropped open.  It turned out that Hopkins had a clinic for Marfan patient, seeing people from around the world.

Before doing anything about that, however, Rich’s malfunctioning aortic valve had to be addressed.  The surgeon felt that, because of Marfan, Rich should have it replaced with a mechanical valve.  A mechanical valve would stretch out the way a pig valve would.  The surgery was still in its beginning stages, just past the point of being “experimental.”  The surgeon warned it could be 50-50 either way.  If he didn’t have the surgery, Rich knew he would weaken and die.

The night before the surgery, we comforted each other the best way we knew how.

My parents, still active over-drinkers, grudgingly agreed to come and watch our sixth month old baby son.  My father actually asked me why I needed to be there for the surgery when Rich would be knocked out; besides, the nurses would be there to take care of him when he awakened.  I was already stressed and my mind was blown.  I reminded him how we all sat in the waiting room for hours during my mom’s hysterectomy because we were so worried about her.  What if she’d died?  I guess my father “got it”.  I don’t know: I walked out and drove Rich to the hospital.

Rich’s father and step-mother drove down from New York, arriving just after Rich was transferred from Recovery to the ICU.  I was only able to see him for the seconds it took for the orderlies to hurry his stretcher down the hall.  He looked scary but he was breathing.  He was on a ventilator and his wrists were tied to the stretcher railings.  Rich’s dad and stepmom arrived just a few minutes after I left the hospital.

Rich was in the ICU for a week.  From the moment he woke up, he fought the ventilator.  He tried fingerspelling (he learned signs to communicate with my parents) to the nurses but they were clueless.  One of them called me because he’d begun rocking and rolling and wouldn’t lie still.  The nurse wanted me to tell him to relax.  I tried but I just heard him trying to speak, a bark-like noise.  I figured out he was saying, “Off, off!” and told the nurse he wanted the ventilator removed.  They did and he calmed down.

Still, he became depressed over the next day or two.  I used the TTY to ask my parents to come back over so I could go and visit him; cheer him up.  Grudgingly, my dad dropped Mom off to stay overnight and I went to see Rich.  He perked up immensely when I arrived, so I spent several hours with him.  When I got home, Mom accused me of taking advantage of her by staying away so long.

I suggested we have my dad come NOW and get her; I would take the baby with me to the hospital the following day and ask for help.  I wasn’t going to abandon my husband just because my parents felt inconvenienced.  Mom saw how upset I was and backed down.  She agreed to stay one more day.  That, at least, gave me time to make other arrangements.

When Rich was released from the hospital, he was very weak.  The only steady income we’d have over the next 2 months would be from my part time market research job and any interpreting I could pick up.  I knew I couldn’t ask my parents for help so I reached out to Rich’s sister and his stepmother.  Each drove from Long Island to Maryland to care for our son and Rich so that I could continue to work.

It was exhausting and we were struggling financially, but Rich was alive and recovering.  His mood was still low, though, because of our financial situation.  It didn’t help when we went to see the cardiac surgeon and learned that his heart was still very enlarged.  I got the doctor aside and asked what were Rich’s chances.  The surgeon asked, “Are you sure you want to know?”  I did.  No more than five years, he said.

It was a shock.  

I missed my period.  Was it stress?  Even in stressful days, I was regular to the day.  I was a week late and made an appointment with our doctor.  I went by myself, leaving my mother-in-law to care for Rich and Billy.  I told the doctor I needed a blood test; I was pregnant.  No, no, he said.  You are just stressed.  So much has been happening.

I insisted I was pregnant.  I was NEVER late.  Sighing, he drew my blood.  Days later, he called and sounded stunned.  “Yes, you are pregnant.”  Then he advised me not to tell Rich, who might find the news devastating and depress him further.

Great.  I’m not supposed to confide in my husband and best friend, left alone to worry about how we were going to survive all this.  And Rich wasn’t even supposed to live more than five years!  I didn’t want to tell my in-laws yet, either, and have them accidentally spill the news to Rich.

It ended up being me who spilled it.  One day I was in the dining room and, while Rich napped, I began wondering what would happen to us without Rich.  I began to cry.  And then Rich was there, wanting to know what was wrong.  I tried not to tell him the truth but gave up when he kept asking.  Maybe I’d end up killing him off sooner but I couldn’t help it.

To my complete surprise, he broke out in a big grin.  He was absolutely delighted.  The news pulled him right out of the dumps.  When I saw how happy he was, I was thrilled too.

Rich was scheduled to have another echocardiogram about 8 months after his surgery and I was definitely ready to have our baby, top heavy and waddling about.  When the surgeon came in after the test, he had an amazed look on his face.  “This is like a miracle,” he told us.  “The size of the heart has gone down in size by almost half.”  He looked at Rich and asked, “What have you been doing?”

Rich answered straight faced: “Making a miracle baby.”  He swore that he regained all his hope when he learned we were to have another child.

So, happy birthday, Miracle Baby.

Rich began to have atrial fibrillation in March of 2001, a good 13 years after his surgery.  The night before his appointment to see an electro-cardiologist, he passed away in the night.