A Mother's View: Amy

My pregnancy was a long nine months, filled with numerous health concerns. I developed a rapid heart rate that made even the simplest task exhausting. I was advised to start beta blockers while in my 9^th week of pregnancy. All I could think about was my baby’s rapidly developing body, and how afraid I was that any medication I took could interfere with the development of the baby growing inside me. I decided that it wasn’t worth the risk and refused the medication, then waited for my health to get better; but my heart rate just kept getting faster and faster until I wasn’t able to work or even care for my other child. Over the next several weeks, there were two trips to the ER, and each time the doctor told me that there was nothing they could do for me if I wasn’t going to take the medication. I had reached the second trimester, and I realize that my immobility and anxiety were probably just as detrimental to my unborn child as the medications, which were a category B. We decided to try the medication and see if I could regain some function of my old daily life. The medication helped some. My heart still beat way too fast if I tried to walk long distances, but I could at least get around the house and take care of my son. I was constantly worried about what affects my rapid heart rate and medications to treat it could be having on my baby. At my 37 week prenatal check-up, my OB informed me that my platelets were becoming too low. He was concerned that if we didn’t induce right away, that I might hemorrhage and be unable to control the bleeding. So we scheduled an induction for the following Monday.

We arrived at the hospital on Sunday night so that the nurses could prepare us for the induction. When we arrived, my daughter was lying breach. They talked about C-sections in the morning and I started to panic. I asked the nurse for a big bag of ice, and I spent the entire night with that bag of ice sitting on my daughter’s head at the top of my swollen belly. I could feel her wiggling and squirming inside me, trying to get away from the unpleasant cold sensation. All I could do was hope that my daughter would take the hint and do what mommy was pleading with her to do. I finally fell into a restless sleep a few hours before the scheduled C-section.

I was awaken by my OB at 7AM, he brought in the same ultrasound machine that the nurses had used the night before, just to make sure one last time before prepping me for surgery. When I saw that my daughter had flipped completely around and was now lying head down, I was so relieved. My water was broken and the induction was started. I had wanted to have my daughter naturally, but after 8 long hours of contractions and no progress, I found that I could no longer take the pain. I opted to have the epidural. As disappointed in myself as I was, I believe that it actually helped move things along. Thirty minutes after having the epidural, my 6lb 10 oz daughter came gurgling into this world!

I remember thinking, “shouldn’t she be crying more?” But at this point, I was so exhausted that I went on auto-pilot and just waited for someone to tell me that she was perfect or something was wrong. After what seemed like an eternity, they finally brought her over to me wrapped in blankets. She was still covered in the white vernix, confirming that she was still relatively premature and could have stood to cook a little longer in mommy’s oven. She was so perfectly beautiful despite being covered in all that goo, her little eyes rolling back in her head and her gummy mouth squished into a tiny pucker face. I wish I could remember more about that moment, it all seemed to fly by so quickly.

The first few nights in the hospital were pretty uneventful. She was still so small that it didn’t take too much effort for her to breath. She made little squeaks every now and then, but all babies do that, right? Her only problems were keeping her temperature up and her blood sugar being too low. She was so tiny and skinny, her legs wrinkly from the lack of fat that she could have used if she had been allowed more time to grow in my belly. The third day she started getting a little jaundiced, but nothing so terrible that she had to stay in the hospital. We were discharged and brought our beautiful Hannah back home with us.

The first thing that we noticed about Hannah was that she never cried. At her one month check up, I even asked her pediatrician if it was normal for a baby not to cry. They said I should just consider myself lucky. When she was hungry, she wiggled and grunted, but never actually cried. She never complained about being wet or dirty, and still only grunted when she was cold after her baths. Now that I look back, I wonder if that wasn’t because she was so tired from just breathing that she didn’t have the energy to actually cry for her needs.

At about 6 weeks we started to notice the less than normal squeaking. Sure, all babies make weird little noises, but I could tell that these were something different. There was something wrong with my perfect little baby. We laid her on her back to sleep, but every 10 minutes or so she would flail her arms out and let out a high pitched squeak as if gasping for air. As soon as I picked her up she was able to clear her throat and after a few frantic seconds would calm down and drift back to sleep. This continued all night long, to the point that no one was getting any sleep. I approached her pediatrician and asked what could be causing these spells. Her reply was, “All babies squeak. It’s just what they do.” I couldn’t accept this for an answer, so I went online and I googled until I found articles about LM. The symptom sounded just like what was happening with Hannah, so I printed it off and carried it with me to my next visit. My pediatrician informed me that “Yes. That could be what it is. However, there is nothing you can do about it; she will just have to eventually grow out of it”. I thought of my daughter struggling to breathe every night for the next two years, and I said, “No, that’s just not acceptable.” What can I do to make this easier for her to live with? What do I do if it doesn’t get better, if it gets worse? What are our options? What can I expect our lives to be like until she does grow out of it?

I insisted to be referred to an ENT at Vanderbilt Children’s Hospital. It was there that my daughter was scoped and they confirmed that she did have Mild LM. The doctor informed me that it would probably get worse before it would get better, and she gave me a prescription for medication to give her in the event that she should get any sort of respiratory illness. She informed me that if she did get sick, it would be far worse than for a child without LM, and that it might take some quick action to ensure that she wouldn’t have to be hospitalized. Although I appreciated her honesty, this revelation scared me to death. I was supposed to go back to school in a few months, who could I get to watch my daughter? Would she be safe in a daycare with lots of other kids who might get her sick? How serious could it get? Could she die if she did get sick? How could I protect her?

To be continued..