About Dot

The first ultrasound on Dot was disastrous. So much so that my wife didn’t tell me about it for several days.

The radiologist said there were bone malformations … a misplaced heart … a cyst where her brain should be. (Editorial comment snipped).

So we had it redone by a more senior radiologist. She’s fine. Yes, there’s a brain cyst, but it appears to be disappearing. Things seem to be fine – and oh yeah, the previous radiologist has a history of “overreading.”

Still, there were enough indicators to keep concerned with, so we had more ultrasounds than one normally would. Dot’s bones were developing fine, her heart was OK, and the cyst disappeared. However, there were things to be concerned about – she had a smaller nose than normal, for example, which could be an indicator of Down's syndrome. But as the radiologist said, “My wife has a small nose, too.”

Downs isn’t entirely unknown to me. I have a cousin, some six years older, who has Downs and lives in a group home. She’s not without problems, but I blame her parents, who probably never liked her very much and expected that she would die before they did. That didn’t happen – so after several years of telling Sue how awful it would be to live in a group home, her dad dies, her mom becomes more infirm, and then she is sent to the home. In her early 50’s, she’s probably on the level of an 8 or 9 year old.

When we were buying our new home one of the legal disclosures made was that the house was next door to a group home, of about six women with various kinds of mental retardation. Talking to the real estate agent, it really did bother some potential buyers, and did have some effect on the value of our house. Didn’t bother us a bit – in fact, we looked forward to meeting these neighbors.

So Downs by itself wasn’t scary for us. And, while my wife is “pro-choice” (I’m not, unless it’s the mother’s life or the kid’s obviously going to live a short, suffering life), we didn’t think Downs was any ground to terminate the pregnancy.

On the day Dot was born, my wife was feeling the contractions all day. When she decided that this was it, we called the doula, hustled Henry into the van (Miranda was with her mother) and dropped him off with some friends, then raced to the hospital. Dr. Wife had been learning self-hypnosis for birth, so she took along her CD along with my CD Walkman so she could hypnotize herself.

Unfortunately, it was rush hour.

Unfortunately, she’d never played my CD player before so we had to put the hypnosis disk in the car’s player.

So there I am, with a woman in labor, slogging through rush hour freeway traffic, listening to a CD that’s supposed to hypnotize you. It was not the most optimal birthing situation. I could’ve pulled over to fix the Walkman, but I felt time was of the essence – I didn’t want to wind up on the news, giving birth in a van.

We made it to the hospital and, about 20 minutes later, out came Dot. She looked gorgeous, already with a thin mop of red hair. But the nurses were unusually quiet as they cleaned her off.

The pediatrician came by to look her over – he was a colleague of Dr. Wife’s so he was very kind as well as professional. Dot has several indicators of Downs syndrome, he said – the folds around the eyes, extra skin in back of the neck, extra space between the big toe and the others. It would take a genetics test to know for sure.

We heard this quietly. We were both half-expecting it. I actually felt a little relief – “OK, this is the situation we live with.” I called friends and family on the cell phone from the courtyard, and disclosing the Downs always brought silence.

Dot was taken away from us in the recovery room because there was a slight chance of infection, so they wanted to put her on antibiotics. She had to spend several days in the NICU, they said. Mom was discharged, and came home without Dot in her arms.

A few days later, we got a call that said they were transferring Dot to a more acute hospital. She wasn’t keeping down food, and there was a possibility of a necrosis – a section of her intestine was dying. This is not usually survivable.

We visited her in the new hospital, Kaiser Sunset in Hollywood. Mom had trained there, and was familiar with many of the physicians, and frankly we were given some extra deference as a doctor’s family. Fortunately, they determined that it was not a necrosis, but that she’d had Hirschsprung’s Disease, where a section of the intestine has no nerves and just does not work. The correction is to surgically remove the offending length of intestine, and over time the remaining intestine will do the work.

By that time, both my wife’s mother and my own had come to be with us. We arranged with Mother Jane from church to have Dot baptized in the NICU.

Dot went into surgery, and came out just fine. She spent about another week in the hospital. Three weeks after birth, we brought her home.

The surgical scar has healed so that it’s almost undetectable. She is growing and putting on weight. Dot has also demonstrated an extrovert streak – she will squawk if left alone, and really blossoms when you pay attention to her.

As she’s grown, the outer signs of Downs syndrome are becoming more obvious – she has the eyes, and the floppy ears. But she reacts to what’s going on around her, and she smiles when she sees her Dad, and that alone is worth a million dollars. We love her very much.

Modified 4/6/05