On my way to acceptance... slowly

The literature on grief and loss is pretty clear on what the goal of grieving is, acceptance. As I move forward in my efforts to cope with the loss of my son, I wonder if I will ever truly accept what happened. For me, reaching acceptance would involve being okay with Keller's death and being okay with how everything changed in a moment. Honestly I'm not there, in fact, I'm far from anything that even resembles acceptance.

One reason why I think that acceptance is going to be difficult for me is the fact that I can't accept what happened to Keller and I in the weeks leading up to me giving birth. Starting at about 37 weeks, my skin became extremely itchy and uncomfortable. I didn't have dry skin or anything rather, it felt like the itchiness was coming from the underside of my skin, not the topside. When I told my doctor about it, she said that it was a normal thing that happened late in pregnancy. I brought it up again in my 38 week appointment and again during my 39 week appointment. As the weeks went on, my itching got worse and worse. People did their best to help me, but nothing I did to the outside of my skin helped. I started to wonder if the itching would drive me, and those around me, crazy.

During one of my appointments, my doctor did tell me that the itching was caused by my liver working overtime. She said that it sometimes happens to women late in their pregnancies and that the only cure for it was to give birth. She said that it wouldn't hurt my baby even if it made me miserable. While it was difficult for me to understand how something that caused me so much distress wouldn't harm Keller, I took her word for it and persevered through the last weeks of my pregnancy.

By the time I woke up on Friday, August 28, I couldn't stand it any more. I called my doctor's office and the nurse told me to take Benadryl and put oatmeal lotion on my skin. I was a little confused about the Benadryl, because it is makes people sleepy and I was trying to get my body to DO something, i.e. go into labor. I did as I was told and it didn't help. I felt like my big itchy body was telling me that it was done being pregnant and it was time to move on to something else. I was disappointed in the blah response that I got from my doctor's office, but I assured myself that I would be feeling better once I got to hold Keller in my arms.

The truth is, I wasn't very itchy at all on Monday, August 31. I thought that I was finally getting some relief and I was happy. I realize now that I was relieved but also very concerned because Keller hadn't moved very much that day. I chalked it up to the busy weekend he had and thought he was sleeping. When I went into labor that night, I was excited for my pregnancy to finally come to an end. It's amazing what a roller coaster of emotions I was on during that time.

From the moment I found out that Keller didn't have a heartbeat, I believed that my cholestasis had something to do with his death. Even when he was born, with the cord around his neck, I still believed that the problem with my liver had something to do with what happened to him. Maybe he was itchy too and that was why he was so active at the end (when a lot of babies slow down). Maybe his high activity level caused him to get tangled in the cord. And maybe when he dropped, to prepare for birth, the cord got pinched. Maybe his circulation was already affected by the Benadryl I took and he didn't get enough blood or oxygen through the tangled and/or pinched cord. Who knows? But those questions have plagued me since my days in the hospital.

I will forever wonder what would have happened if my call, when I was at the end of my rope, on that Friday, was taken more seriously. I'm sure the nurse who answered my call wonders that too. Maybe if they had just had me come in to check on things they would have noticed something amiss. Maybe if I had told them that I thought my blood pressure was high, to really get their attention, they might have given more thought to inducing me early. I feel that my concerns were sloughed off, likely because I wasn't a complainer and I had been so healthy up to that point. That's no excuse and I will forever wonder why my concerns were pushed aside so easily by my medical providers.

In my preparation for another pregnancy, I have been reading several books and Internet articles on a variety of topics. In one of my books, Trying Again: A Guide to Pregnancy After Miscarriage, Stillbirth, and Infant Loss, it talks about pregnancy complications and their effects on the mother and fetus. One of the complications it lists is, "jaundice (intrahepatic cholestasis), and states that the effect is, "You may be at increased risk of experiencing either a premature delivery or a stillbirth." I was shocked when I read that, in plain English, but I tried to play it off. I thought, "maybe that isn't what I had." So I Googled it and made sure that I spelled everything the way the book had it. (Douglas, A. & Sussman, J.R., M.D., 2000)

What I found startled me. My search turned up countless websites that described the exact symptoms I had and every single one of them stated that in rare and extreme cases, cholestasis increases the risk of pregnancy complications, including stillbirth. I was shocked, angered, confused, and overwhelmed by the information in every website. What hit me hardest was the fact that my instincts were right. While I can't say that the cholestasis definitely caused Keller's death, I was right about the fact that it very likely played a part in what happened to us.

One of the best websites that I found was http://www.itchymoms.com/. This website was, and continues to be, a blessing to me. Written clearly and in lay mans terms, with medical documents for support, the website paints a clear picture of what I and many other mothers have experienced. It both comforts and saddens me that there is an entire website dedicated to people who have had similar experiences as I have. Some of the women on itchymoms.com have had successful pregnancies in spite of cholestasis. Some of their pregnancies, unfortunately, have ended like mine did.

From my research, it appears that, while cholestasis is rare, it should be better known and understood by the medical community. There are specific tests for it, which I as not offered, and medical treatments, which I was also not offered, that could have prevented Keller's death. What do I do with this information now that I have it? Where do I go from here? These are the questions that now plague my thoughts. Do I sue my doctor? Do I sit back and let it happen to someone else? Do I rant and rave and allow my anger to take over my life? I honestly don't know.

As I continue my quest for acceptance, if that is really what would be classified as successful grieving, I know that my progress will be hampered by my belief that what happened to Keller and I was not a freak accident. Rare and unexpected? Yes. Freak accident, as in could not have been predicted or prevented? No. What Keller and I went through is not, and will never be, okay with me. I will have to find some way to live with it, but I don't have to accept it.

What I do know is that I want to have another baby. And when I get pregnant again, I will be up front and honest with my doctor about my past experiences and my expectations of him or her. I will be frank about my belief that cholestasis directly impacted, if not caused, me to lose Keller. A lot of the research states that women who have had cholestasis in a pregnancy have up to a 90% chance of developing it in subsequent pregnancies. I will make sure that my next provider is aware of this and is willing to take steps to prevent me, and my next baby, from experiencing anything even resembling what I went through before.

One thing that I have learned during this whole experience is that we are all responsible for our own health care. Doctors and nurses see a lot of patients and they aren't Gods. They work with the knowledge that they have and they rely on us to know our bodies and relay that information to them. I have learned a valuable lesson, albeit a difficult one: At the end of the day, I am ultimately responsible for my health and that of my children. My instincts are good, but they only work if I listen to them.

I know that acceptance is a far off, if not impossible, goal for me to reach. Honestly, I'm okay with that. There are a lot of things that I refuse to accept but I live with them anyway. However, I am committed to moving forward and leading a life that is not ruled by anger or resentment. I have a loving husband who is committed to increasing our family and giving me the children that I want so desperately. Now that is something that I can accept.