Oh how time flies! Thirty-five years ago, things were very different and I have seen the effects technology has had on society. As a teacher, I see how much my students have available to them at their fingertips instantaneously. And as a mother, I see how far technology has taken us in the field of medicine.
In 1983, when our daughter Kristin was born, we had no “heads up” that she had a neural tube defect, Spina Bifida. In fact, my six month ultrasound looked normal and I felt good throughout the pregnancy, short of a bit of morning sickness in the first trimester. Fast forward to today, Kristin is 23 weeks pregnant and I am astonished at what I’ve been able to see on a 3D ultrasound and at the number of studies that can be done to rule out various birth defects and complications. Thanks goodness for all of this as 13 years ago, Kristin lost our first grandchild, Xavier, at 22 weeks due to complications she had due to kidney infections related to her Spina Bifida.
I’m not going to lie, I wasn’t sure she should get pregnant again, but I realize the reason behind that thought was selfish. Kristin was so sick during that first pregnancy and devastated after her loss that I just did not want to see her go through a possible repeat. But all looks good this time around and fingers crossed, Kristin will stay healthy throughout the pregnancy.
I know we raised an independent young woman who knows what she wants and goes for it and when she and our son-in-law, Matt announced they would be trying to get pregnant, I had to breathe deep and accept. They have done everything conceivable (like the pun!) to make sure all goes well this time around and with God’s blessings, we will be welcoming Louise Victoria Marquis into the world in late April/early May! Mimi and Pops could not be happier or more proud of what our “kids” have accomplished. They are a team with a great support system in place (both family and medical professionals) and I trust in what is to be!
Kristin has asked me to share a bit about our experience having and raising a child with Spina Bifida, so here goes . . . When I went into labor on the morning of the 4th of July (Kristin came in with a “bang”), I called my OB-GYN to let him now how far apart my contractions were and I was told to head to the hospital. All was going along as planned.
After an exam revealed Kristin just didn’t want to get in the right position, I learned I would be having a C-section delivery. We knew this might be the case — Kristin’s head was up in my rib cage throughout the last trimester. I remember being on the operating table waiting for my doctor having tremendous back labor and the nurses helping me on to my side rubbing my back. My husband, Mark, was there for the delivery and the “screen” was up so we did not see what was going on with the procedure.
We got the news we had a girl, but not much more was said except that Mark (my husband) was escorted out of the room with the nurses/doctor along with our baby girl. I lay there unaware of what was happening and hearing a lot of suctioning of fluids before I was stitched up and eventually brought up to my room.
I honestly don’t remember a lot of what happened after that except that we were given a crash course on Spina Bifida (or myelomeningocele). Kristin was brought into my room in an incubator (or so it looked like one) and I was able to place my hand in to touch hers, but not able to hold her. Her little sac at the base of her spine was wrapped in what looked like saran wrap and we were told she would be traveling by ambulance to Dartmouth Hitchcock Hospital to undergo surgery to close the opening. We could expect her to be there while I recouped from my surgery. Mark was told he could follow the ambulance and before I knew it, our little baby girl and my husband were off to Lebanon.
At the time, a woman undergoing a C-section spent about 5 days in the hospital, so needless to say, I was not happy that this most precious time in my life did not involve holding and nursing my newborn. The hospital staff was great and I was able to pump my breast milk to freeze for later use. They arranged for a Spina Bifida Clinic coordinator from DHMC to visit with us for a full briefing on just how our “boo-boo” baby (as Mark lovingly referred) was doing. She had seen Kristin and we felt an instant connection — she seemed to know just what we needed to hear.
I do remember that on the day I delivered and before going to Dartmouth, my pediatrician (who had been called in after the delivery) did tell us that he felt Kristin would be able to walk as she was kicking her feet and she had a low opening (L5-S1). I really didn’t understand why he was saying this as I had no idea she might not walk. Kristin was able to come home just one week after she was born, but we were told we would be seeing the range of specialists at DHMC Spina Bifida clinic monthly.
There were many issues with bladder infections requiring surgeries to reimplant her ureters at 2 and 3 years old. As she grew, her bladder didn’t and could only hold 50 ccs of urine, so she eventually had a bladder augmentation. A tethered spinal cord required surgery and as an adult, she had a bowel obstruction that needed repair. We have gone through a lot, but I truly believe God doesn’t give you more than you can handle. Mark and I handled it together and we count our blessings each day for what we have.
We have had our struggles having a child with a serious birth defect, but no outward signs of it. Her lack of bowel and bladder control caused issues early in her school years. We had a school nurse who would not catheterize Kristin and so I had to leave work to go to school to do so. Kristin learned to cath herself at a very early age, but this created issues with her “pretending” she was doing it behind the nurses’ closed bathroom door. She just wanted to be normal. I also recall her Readiness teacher greeting us at an Open House with, “Oh, you’re the parents of THAT child” and she proceeded to question why Kristin had accidents and was unaware.
In 5th grade, when she carried around her supplies in a little purse, kids were curious and that was when she wanted to explain (with her teacher and the nurse) to her class why. I was there and so proud of her for being able to speak up for herself and not be ashamed of who she is.
Today, when I read Kristin’s blog posts, I am brought to tears at the independent, loving, compassionate person she is and how sharing her story has helped her heal. I trust that in sharing her story and in my sharing ours, that someone else going through similar experiences can relate and understand they’re not alone. Things do work out; God does not give you more than you can handle; and this too shall pass.
Spina-Beautiful 