28. Chapter Twenty-Eight
Chapter Twenty-Eight
Jane
W e had enough time between Meg’s appointments to grab some lunch. If the kids were half as gobsmacked as me, they had to be operating on auto pilot.
I’d wanted to take the geneticist by the collar and shake him—give him the details about my disaster of a cesarean, waking up in so much pain I thought I was being ripped in half, bleeding like someone opened a spigot. I wanted to tell him about the time I’d spontaneously started bleeding on an airplane and had to be rushed to a hospital when we landed in New York City. My mind whirred with dozens of other unexplained events in my life that pointed to vEDS now that I knew Meg had inherited it.
I had a ruptured uterus, God dammit. In my opinion, the doctor should have shown a hell of a lot more concern for my pregnant daughter!
As soon as she told me about her genetics results, I Googled vascular Ehlers-Danlos. With sinking dread, I read through the exhaustive list of symptoms, some of which I had and some of which I did not. I’d always thought Ehlers-Danlos syndrome meant hypermobility of joints, but that was not the case with me or Meg and was not necessarily the case with vEDS patients. Aside from the rupture, red flags for me were dissections and aneurysms, of course. But there were others: the mitral valve prolapse that had been found when I was twenty, thin skin, easy bruising, excessive bleeding, wounds took longer to heal, the appearance of old hands. If anyone tried to guess my age by looking at my hands, they’d probably think I was ninety.
But to me, the absolute most hideous red flag was alopecia. I’d taken every supplement known to man to combat my hair loss, yet it seemed to get thinner by the day. For the past several years I hadn’t needed to cut it because the strands broke so easily. It was humiliating to look at my ponytail, its diameter no more than a centimeter. Type III collagen was essential for hair growth. Not only was mine thin, it was so fine, I had difficulty seeing individual strands.
At least the genetics lab was going to put a rush on my results so that Meg’s doctors might be able to give her appropriate guidance.
Damn!
This was all my fault!
When Meg was born, the world of genetics was in its infancy—was basically nonexistent. Throughout my life, I’d been having vEDS events and no one even knew what they were—just told me I was imagining things, or I was having a migraine—or one of my favorites—it was ancient history and never needed to be referred to again.
Damn, damn, damn!
I excused myself and headed for the bathroom where I locked myself in the privacy of a stall and did my best not to scream. If only someone had told me about vEDS at some stage during the course of my life, Meg might not be in this situation right now.
Of course my daughter had inherited it from me. I didn’t need a genetics report to prove it. And because of me, my baby was in an untenable situation. Over the years, I’ve watched her go out with one deadbeat guy after another. She finally meets a man who is charming, respectable, who has similar interests, and who has a great career, and she’s broadsided by this crap.
It’s not fair.
Why in God’s name did we draw the short end of the stick?
Why the hell am I still alive? I’ve already beaten the odds by nearly a decade. But if I can beat the odds, my daughter surely can!
My father was fifty-one when he died—he hit the average life span right on target.
But he was a drinker.
Meg’s not.
I’m not.
Meg will be fine.
I slammed my fist against the side of the stall. God dammit, Meg will be fine!
I closed my eyes and clasped my hands in prayer. Dear God, you blessed me with a miracle when Meg came into my life. Now I ask you to bless her as you did me. Hold her in your hands and keep her and her baby safe from this awful disease. Amen .
p.s. God, if you need somebody. Take me. Please, please, please take me.
They allowed both Mike and me to attend Meg’s second ultrasound—though this one was at Moya’s world-renowned birthing center. Mike sat in a chair beside my daughter and I was directed to a seat across the room, but at least I had a great view of a large monitor mounted on the wall.
As she worked, the technician explained every angle of the baby and I marveled at how far things had progressed in the past thirty years. The images were so clear, I could make out the baby’s nose, and count its fingers.
“Baby’s heartbeat is strong,” said the technician, turning up the volume so we could all hear the rhythmic beat of life. “Do you want to know the sex?”
“Yes,” Meg said while she and Mike nodded excitedly. The man must be a saint because he seemed to be taking all of Meg’s high-risk complications in stride like a cheerleader on happy pills. My daughter needed that kind of positivity in her life and I had no doubt Mike was a gift from God just like the baby.
Even before he knew the child was his, he’d asked her to marry him, which in itself made him a hero. They’d decided to delay the wedding until after Meg gave birth but I didn’t care. They were together and he was incredibly supportive and that’s what mattered.
The technician moved the probe giving us a clear shot of a penis. “Your son is cooperating with us today.”
Meg grasped Mike’s hand, her smile radiant. “It’s a boy!”
“Do you have a name picked out?” asked the technician.
“Zachary after my grandfather,” said Mike.
“Zachary James,” Meg added, “After both of our grandfathers.”
James wasn’t my father’s name but was Jack’s. I guess they must have opted to take names from their paternal side?
Once the technician got all the images she needed, we waited in the ultrasound room for Meg’s new obstetrician to come in—this would be the person who would manage her high-risk pregnancy from here on out.
I was surprised when a woman who looked as if she might still be in her thirties came through the door. She was hardly older than Meg. I expected someone a bit more senior—someone who had seen every crises known to man and nothing daunted her.
“I’m Dr. Sandy.”
She pulled over a stool and sat opposite Meg, her expression filled with concern. “I just read the report from the geneticist.”
“Is my baby going to be all right?” asked Meg.
“He’s doing well.” She folded her hands and looked my daughter in the eyes. “But we need to have a conversation.”
My heart squeezed and I swear I sank in my chair, preparing for the worst.
Mike slid his arm across Meg’s shoulders and pulled her close. “Okay.”
“You know why you’ve been sent here to Rochester, right?” asked the doctor.
“Because I’m high-risk?” Meg sounded so confident even though I knew she was terrified.
“Yes, you are. vascular Ehlers-Danlos syndrome is particularly nasty. And I need to say up front that even though you have inherited the less life-threatening mutation, you can still die from a ruptured uterus. That combined with your history of high blood pressure concerns me…a lot.”
We all stared at Dr. Sandy. I, for one, was afraid to inhale.
“So,” the doctor said after a long pause, shifting her gaze between Mike and Meg. “I urge the two of you to discuss how you wish to proceed. If you decide to terminate the pregnancy, we will support you.”
“What if I want to keep the baby?” Meg whispered while a tear dribbled from the corner of her eye.
“Then we will do everything possible to guide you through the process. The delivery will have to be a caesarean. And because of your blood pressure, there is a higher risk of pre-eclampsia, which means a premature birth. We have an outstanding NICU unit here, but preemie babies are subject to a number of possible complications.”
Meg nodded, her shoulders shaking.
Mike kissed her temple.
Dr. Sandy gripped my daughter’s hands. “You don’t have to make the decision now, but you’re already into your second trimester. We’ll need to—”
“I want to keep the baby.” Meg’s back straightened, her voice sure and determined. “Whatever it takes, I want this. We want this.”
The air whooshed from my lungs as my eyes welled with tears. By God, somehow I’d raised a warrior princess.