Monday, August 16, 2010

G is for Guilty

When Annie was born 3 years ago, I was still an OBGYN resident in the last year of my training. After 10 short weeks of maternity leave, I had to return to work for 80 hours a week, every week, for 8 months. I was overcome with guilt. There was the I-work-too-much-and-I'm-missing-my-daughter's-infancy guilt. There was my-husband-is-basically-a-single-parent guilt. There was I'm-so-tired-that-even-when-I'm-home-I-can't-spend-quality-time-with-her guilt. I second-guessed my parenting at every step, and I worried that I was doing things that would negatively impact her development, our relationship, you name it. And one day, my best friend said to me, um, welcome to the club. There are never enough hours in the day, or days in the week; even if you spend your every waking minute with your daughter, you will always be able to find a reason to feel guilty. And slowly, as I talked to other moms who had similar experiences, and my daughter grew from a happy, well-adjusted infant to a rambunctious and brilliant toddler, I realized that Annie was doing just fine in spite of my worries. So fine, in fact, that I thought it would be just great to have another baby.

A little over a year ago, my son Lively was born; I was delivered two weeks early because my amniotic fluid volume was low. (I should have been more careful to stay hydrated.) He weighed 5 pounds 15 ounces. (I should have eaten more, and not taken any medications while I was pregnant.) When he was one week old my grandfather died, and we traveled to Kentucky for the funeral. While we were there, Lively got an eye infection and a fever, and he was hospitalized twice, requiring multiple needle pokes, IV antibiotics, and 2 lumbar punctures. (I shouldn't have let so many people handle him and expose him to their germs.)

When Lively was 3 months old, he was diagnosed with torticollis, which is a contraction of one of his neck muscles that limits his movement. His pediatrician sent him for physical therapy. (I should have done tummy time more.) When he was 6 months old, he started having seizures. (I should have noticed something sooner.) He was diagnosed with infantile spasms, and an MRI showed that he had had a stroke, probably around the time of his birth. (What the . . . ?) A blood test showed that he has a genetic mutation that slightly increases his risk for developing blood clots. It doesn't explain why he had the stroke, but is perhaps an underlying risk factor. (Have I passed some horrible genetic condition to him?) He was treated with ACTH, a drug that decreased Lively's seizures dramatically, but that basically caused him to feel absolutely terrible for months and that brought his development to a screeching halt.

For some reason I still don't understand, Lively stopped eating and drinking when he was 9 months old. He was hospitalized for dehydration. After a few days, he aspirated after vomiting, went into respiratory distress, and required urgent intubation and a ventilator to help him breathe. While in the ICU, Lively developed a blood clot in his leg, and required a blood transfusion because of the multiple attempts at acquiring IVs, PICC lines, and central lines. (I never should have let so many junior residents try to place his central line.) After he was extubated, he refused to breastfeed, to take a bottle, or to eat, all things he did with gusto until a few days prior to his hospital admission. (So despite the fact that I am committed to breastfeeding and, as part of my medical practice, help women who are struggling with breastfeeding, I can't breastfeed my baby anymore.)

Lively went home with an NJ tube, a feeding tube that went from his nose to his intestine, into which breast milk was pumped 18 hours a day. When he was 10 months and 2 weeks old, I ran out of frozen breast milk and my milk supply had decreased so much that I had to give him a little formula. (I should have pumped more, remembered to take all my herbal supplements, and banked more milk along the way. In fact, I should be pumping right now.) When he was 11 months old, Lively still refused to eat or drink, and didn't tolerate feeds into his stomach, so his gastroenterologist and surgeon recommended a G-J tube to be inserted through his abdominal wall, running from his stomach to his intestine. (I should have tried harder to get him to eat.) Two days before the scheduled surgery, Lively pulled out his NJ tube, and so I attempted to put in a nasogastric (NG) tube. This is something parents are commonly taught to do at home. When I tried to place it, the tube went into his trachea instead of his esophagus, and caused his lung to completely collapse. (Perhaps I'm not fit to be a mom or a doctor.)

There's more. There's lots more, but I think you probably get the point. I'm a guilty mom by nature, and at times through this adventure, I've felt overcome by those guilty feelings.

But some things help me feel a bit better. Friends responding to my blog, sharing their own similar experiences and reactions makes me feel not so unique (a good thing, in these circumstances)! It has taken awhile, until quite recently, for me to realize that I'm a member of the parent-of-a-special-needs-child club. Reading others' blogs has been a wonderful welcome to the club, and I'm thrilled to contribute my own blog to this extraordinary community. I write about guilt, for my very first Hopeful Parents post, because carrying my guilt has been my entry fee into the club.

When Katie's son Lively was diagnosed with infantile spasms in February 2010 at 6 months old, she and her husband Pete were told, "You have a long road ahead of you." You can read more about her family's journey down that road at Highway Lively.


  1. Yes. To all of it. The guilt never stops. Just this morning I feel guilty because I had to go to work early even though I'd planned to take Zoe to get her blood drawn - for regular tests that she really needs to have done.
    Every day is filled with it. But we do our best. We forgive ourselves. We know that the whole truth is that we are always doing everything we can for our children at any given moment. For example, I know that without the money I earn with my job, I can't give Zoe all of the opportunities available to her, so sometimes letting a blood test go for another day is the right thing to do in the big picture. Finding the other side of all of these guilty things can go a really long way - and there is always another side.

  2. Guilt comes with the parenting territory, but it's definitely harder when you're a parent of a special needs child (or maybe we're just harder on ourselves? hard to say) We all question our choices, and hindsight is a terrible thing. I hope that writing helps you look forward and helps you (and all of us) to realize it wasn't our fault. I look forward to reading more from you.

  3. Oh yeah. I know the guilt. Why didn't I notice something sooner? Why didn't we switch pediatricians sooner? Why can't I get my kid to eat? Then, Why didn't I get the g-button sooner? Now I'm feeling guilty because I'm a premed and I start full time university to work next week and my kids will have to go to my mom's when they get sick. I've been KayTar's primary caregiver since we first realized things weren't quite "normal" with her and stepping away from that, even in a small way is making me feel a little guilty!

  4. Katie,
    After reading you words, I would like to give you a great big hug. My son's issues are completely different, but the feelings of guilt sometimes knock me on my rear, too. I hope you don't mind, but I would like to link to this post from my blog -- it is a wonderful description of the extraordinary guilt parents of special needs children feel every day.

  5. This post really speaks to me.
    I have a great little boy who has autism, and I feel almost physically sick when I think of all the wasted opportunities I had to promote his development when he was a baby (this was before I knew he had autism, but I still get to feel guilty!).
    I'm so glad I cam across this post.