There is hope. Don't give up. It might turn out okay. This is our story.
I was working from home the day we found out something was wrong. In fact, I was five minutes from addressing a team of global colleagues on a videoconference meeting when my wife called me from the doctor's office. She was there having an extra ultrasound because we were about to fly from California to England to celebrate her sister's wedding. We had reached 27 weeks in the pregnancy, and so we weren't due to have another ultrasound, but because Emma was a little nervous about flying at such a relatively late stage in the pregnancy, and because she had presented with placenta praevia, we accepted the offer of an extra scan.
She called twice, I think, before I realised she really needed to speak to me. I answered the phone. "The scan is showing that there are black spots in the baby's brain," she said.
I remember trying to rationalize how this might not be such a big deal, but I was instantly googling "black spots in brain". The answers came back: Lesion. Aneurysm. Tumor. I cancelled my meeting and went to meet her at the MRI clinic to which she had been instantly referred for a more detailed scan. She had the scan. It took forever. Anytime the baby moved, the image was ruined and we had to start again. Babies don't like to keep still when there are load mechanical clonking noises all around them. Of course, we didn't get the results there and then.
It was about three days later that we found ourselves in the clinic of Dr. Maria Zlatnik in San Francisco's UCSF hospital. Yes, she told us, there is evidence of two bleeds in the brain in the frontal lobe area. "Intracranial hemorrhage", she told us. Basically, a stroke. (Foetal stroke, technically). Now what?
Important stuff happens in the frontal lobe. Logic, reasoning, deduction, decision making...it's where the brain puts two-and-two together. Brain damage there would mean learning difficulties, maybe several development problems. Probably, a child with damage there would not be self-sufficient. The language she used was very cagey and circumspect, but it still obvious that she was telling us that a late-stage pregnancy termination was an option she thought we should consider.
No. Absolutely not. Even though we really gained no idea what the future would hold for our unborn child in the three days between the ultrasound and this consultation, that wasn't an option. Frankly, I wanted to punch her in the face when she said that. When you read the rest of our story, you might want to punch her in the face too. (If there's one major thing we learned about foetal medicine during this process, it's that it's really really hard to make an accurate diagnosis about anything that's happening insider the uterus.)
Further consultations followed as we tried to figure out just what the hell to expect. I can't remember all the names of the consultants we met with, but I do remember the consultation with Robert Ball. He took a seat opposite Emma and I in the latest in a long line of nondescript consultation rooms, and addressed us earnestly. "Words cannot express how helpless we feel in this situation," he began.He went on to explain how incredibly rare this type of situation was....I tuned him out.
No. Stop. You're not helping. Shut up and tell me something I can use.
Then we met Audrey Foster-Barber, and at last we felt we were dealing with a medical professional who had figured out that - in situations like this - parents are really scared, really freaking out, desperately in need of some information, and frankly, seeking any good news whatsoever. (She was, and continues to be, an amazing physician, and support to our family).
"Kids with brain injuries can go on to live really worthwhile lives," she said.
Good. Now we're talking about "lives". We're talking about "kids". We have a kid, and it's alive, even if it has had a foetal stroke. And we're keeping it, and we're going to give it the best possible life we can. Carry on. This is progress.
At last we received information. Frankly, some of it was scary as hell. I read Clinical Significance of Fetal Intracranial Hemorrhage by Vergani, Strobelt et al. I read Fetal Stroke by Odzuman, Pober et al. I read about different types of hemorrhage (Intraventricular, Parenchymal, subdural, ventriculomegaly, periventricular. I tried to learn what the Germinal Matrix was.
I tried to find a reason. Etiology. The cause. Low platelets? Mother/baby blood incompatibility? Trauma? Cell weakness?
I read about the potential impact on the lungs, liver and, of course, brain. I tried to find the least worst prognosis.
Paresis didn't sound so bad. Porencephaly didn't sound good. Hydrocephalus sounded like it could be worse. Synechiae seemed okay. Colpocephaly sounded bad.
At the end of hours and hours of exhaustive research, I knew two things: I had a ton of questions to ask Dr Foster Barber when we met again. I also knew I couldn't bring myself to tell Emma anything I'd learned, particularly not that in the region of 90% of babies who suffer fetal intracranial hemorrhage suffer a consequent deterioration in utero, and fail to make it at all. So I just crawled in bed beside her and cried. I wasn't crying for myself. I was crying for her. How the hell could anyone cope with losing a baby after carrying it for 28 weeks or more, if that's how it turned out.
In that next appointment, I learned more about brain function and the impact of hemorrhages than I thought possible. For all that: "We won't really know until he's born now," Audrey Foster-Barber told us. OK, we said. We'll see you in 10 weeks.
As it turned out, Christopher was born eight weeks later, two weeks early, a healthy 9lbs-something, via C-section. "It's really your choice," we were told about the C-section. it was another of those astonishing moments in the process. "How is it our choice?" we wondered. "Can't you just tell us what would be safer for the baby?"
The answer was that it all depended on the etiology (that word again). If the baby had a sensitivity to trauma, then a natural birth could cause further brain damage. On the other hand, a C-section could be traumatic in other ways. We opted for the C-section.
The next three days were more-or-less like any first three days of a baby's life. Christopher was a little jaundiced, so he stayed in the intensive care unit, but he was crying, peeing, sleeping, feeding just fine. We should have been relieved, but we were still completely in a state somewhere between shock and denial.
On the Monday after the birth, Christopher was sedated and had an MRI. This was how we would get the clearest picture yet of the damage to his brain. Not knowing when the results would come, I had returned home to pick up clothes, or eat, or something. I was returning to San Francisco when Emma called me: "Dr Nash is here, they have the results of the MRI". "I'm five minutes away, tell them to wait", I said.
"Well," began Dr Nash, "the damage isn't exactly where we thought it was. It's deeper in the brain, in the older part of the brain. It's probably the part of the brain that controls motor skills. In fact, we think we've isolated it to the legs. He'll probably have problems walking, or learning to walk. But the frontal lobe is okay. There shouldn't be any impact on reasoning, logic, development etc. It should be mostly physical."
(This is probably the part where you'll feel like punching Dr. Maria Zlatnik).
We were stunned. Literally. We weren't relieved. We weren't overjoyed. We were in disbelief. What had just happened? We'd spent the last ten weeks anticipated our baby would never leave home; would never be a fully functioning member of society, and now you're saying "he might have problems learning to walk!!!".
We should have been dancing with delight, but we were both thinking the same thing: what are we supposed to believe now? How could the original prognosis have been so despondently bleak, and yet, weeks later, so different?
Suddenly Dr Ball's words seemed so ironically accurate. it's not that he didn't know how to help us; he just didn't really know with any certainty what the hell was happening inside Christopher's head. I wished now that he's just said that. (Doctors, note: it's okay to say you don't know...in fact, it's better than saying you THINK you do know.)
What happened after that? Well, mostly, Christopher proved that Doctor's don't know shit! Don't get me wrong, I am deeply respectful of the medical profession. My brother is a surgeon. But truly, we have learned over and over again that it is just too hard to predict with any degree of certainty what will happen to a baby's brain after it suffers a stroke. I'll say it again - I wish our doctors had been more open in admitting that they just didn't know what might happen.
Don't rule out hope, when hope may be all that parents have.
Factually, Christopher has had some developmental delays. His left side, mostly his arm, has suffered from some stiffness. He left leg also started out a little weaker. But thanks to amazing physiotherapists and occuptional therapists, he's made great progress. He didn't walk until he was 18 months, but that was only four months later than his big brother.
His speech has been a little slow coming, but he's got the key words down: "Mama" and "Dada"! Most importantly, he understands EVERYTHING and for many words that he can't yet say, he's using sign language! He'll be two years old in November 2013, and we're sure he will have added plenty more words to his vocabulary by then.
I suspect I know what you're thinking: "So is he, you know, normal?". Well, yeah, he is. He loves to laugh. He gets mad when he doesn't get his way. He loves to play with trains. He loves to be outside. He has a much better appetite than his big brother. He loves to go on bike rides (as a passenger!). He loves bears, giraffes and especially dogs. he loves trains. He loves cuddles. During the week, he only wants mommy. At the weekend, it's all daddy!
So is that it? Is he fine? Well, we think so, and we believe so, but we're still watching closely. It's not that we're nervous, but like any parents, we watch the signs. And so far, the signs are good.
So, hang in there. If you're the one currently reading about ICH, it could turn out okay. Have faith. Don't get angry at the doctors because they don't have the answers. They simply don't have the answers.
And if you want to talk with someone who's been through all this, drop me an email at davidwmcculloch (at) live.com.
Oh, and this little dude (standing just fine, thank you, and wearing his favorite hat) is Christopher, with his big brother.
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