Praying for Time
Gwen Hartley's second pregnancy was normal, and she says that throughout it she was "happy as a lark." During labor, her baby daughter's heart rate slowed down during contractions. As a precaution, Gwen was given oxygen and Claire received a scalp fetal monitor. The situation never became dangerous, and she delivered her baby with ease on July 25, 2001.
"When they held her up I commented 'Awww, you forget how tiny their little heads are. Look at how she shakes!' The medical personnel knew immediately that something was wrong, but they didn't say anything to me. They just whisked her away. Within a minute, the pediatrician was examining her," Gwen explains.
A few minutes later her obstetrician came to her, held her hand, and said that Claire has serious problems and that her head is too small. Gwen, in typical optimistic style, said, "Well, we'll fix it!" The OB told her that he wasn't sure it could be fixed.
The next day Claire had her first MRI (magnetic resonance imaging). She was misdiagnosed with pachygyria, but when Gwen sent the scans to the country's expert, Dr. Dobyns of Chicago, she received the correct label for her infant daughter's condition: severe microcephaly with simplified gyral pattern (MSG).
The prognosis for MSG is not good. Gwen and her husband, Scott, were told that Claire would probably not live through her childhood. The emotions of hearing such a message were overwhelming.
Gwen says, "In the beginning, I was overwhelmed with horrible feelings of 'could I love her?' and 'why did this happen to me?' I was supposed to have that perfect family now -- one girl, and one boy! Could I do this? Could I nurse her? What about her future? Will she live long??"
Gwen didn't allow herself to stay in that frame of mind for long, though. She shifted her focus very quickly to the question of how best to help Claire. She says she was "on a mission" to nurse her baby, and she succeeded, continuing to breastfeed for nine months.
"It was the sweetest thing I've done in my life, along with nursing my son, and out of everything I've succeeded in doing in my life, this was the most meaningful. To hold her close, feed her from my breast, and bond with her that way, despite the problems -- it was precious," she says.
Now, a year into it, Gwen says this about her outlook and emotional state, "I'm still on the same mission to optimize her life. I still search out all sorts of things to help her, and I feel like I pretty much eat, sleep and breathe Claire and Microcephaly. I know way too much about the brain."
"I contemplate horrible things like losing a child, planning a funeral and explaining death to Claire's doting, almost four- year-old brother. It isn't fair. I still am filled with anger to this day, yet I'm balanced with this incredible love for Claire that surpasses all else. The sadness is intense -- I feel like I'm about ten seconds away from bawling at any given time on any given day. Yet, I wouldn't trade the person I've become because of Claire for anything in the world. She, along with my husband and son, are the lights of my life. Right now, I just pray for TIME".
When I asked Gwen what was most challenging about Claire's care, she had a lot to say.
"Shoot, what isn't challenging?" she says, "My whole idea of 'normalcy' is skewed. I fear I have lost grips with that entirely. I have become accustomed to Claire's head-butting, clenching, not getting straight eye contact much of the time, overstimulation, hypersensitivity to hearing/loud noises, seizures, reflux, stiffness/hypertonia, and TINY HEADS!"
"The only real semblance of normalcy is feeding, and even that isn't all that normal. She is, in many ways, still much like a newborn at one year of age, and that is a challenge in itself. She's not huge, by any means, but she's long and it's awkward sometimes to handle her (with the stiffness too) as you would a newborn. And I only see this getting worse! Yet, her need is still there to be treated like a tiny baby. SO, I give that to her. And I love to hold her --it is, quite possibly, the most holy experience of my life to hold her in my arms, so I don't mind. But it's hard -- not a lot gets done. If it weren't for my mom coming over each week to help me, my house would be a wreck! She is our saving grace."
Gwen and Scott face the possibility of having a g-tube inserted into Claire's stomach to help her gain weight, but for now her slow weight gain is enough to keep them invested in bottle feeding. She is also able to take pureed foods such as fruits, veggies, meats and rice cereal.
Gwen says that bottle-feeding is one of the few normal things she can do for her daughter, and although she wouldn't jeopardize Claire's health by refusing the tube, she's not ready for it yet. Plus, with the addition of butter to her solid foods, Claire's weight gain is starting to pick up.
Despite the lack of "normalcy", Gwen finds much to appreciate about her daughter. "I love the way Claire acts, moves and behaves. One year into this, I find her clenches/headbutts/shivers/Claire-isms endearing," she says. "Her expressions are priceless, and those who've taken the time to learn them and how she communicates never regret it. You have to look hard sometimes and tune into Claire to figure out what she wants or needs, and many aren't willing to do that."
The people in her life react to Claire's diagnosis in different ways. "Everyone is tremendously saddened by the news, and they've all struggled with how to cope. Some get closer -- they want to learn all they can from our angel on earth. Others pull away -- for fear of getting to know her, loving her, and losing her. They pretend she's wonderful and neat and cute, but they're afraid to hold her or don't spend much time trying to get to know her," she says.
"As a whole, we've bonded together and strengthened as a family because of Claire. She is amazing," she adds, " I used to think that out of every single disability, something that affected intelligence or thinking or emotions would be the one thing I could NOT handle. Well, I am. Everyday I am handling it better and better, and I really like the person I've become because of Claire."
Written by Carolyn Murray
