The Fight for Healthcare part two

Even just sitting down to type this installment is painful. This next leg of my journey with a Mother's heart is the one that I thought would kill me. In fact I even prayed for death to come, that seemed preferable to the life that was in front of me. When I have heard people say that they prayed for death to come. I thought that the human need for survival alone made that impossible. But I learned that there are things worse than death. There are things that would make a person pray for death.

When I was seventeen weeks pregnant my doctor ordered some routine tests. She said there was a test she recommended to women my age. It was called the AFP or Alpha Fetal Protein test. She didn't really describe what the test was looking for or how accurate the results would be. She only told me that it was routine. She handed me a little booklet about pregnancy with "Advanced Maternal Age" which was defined as any woman over the age of 35. I was 36, so I fit into this group. I skimmed the book. It listed many ailments I had never heard of. Well, it doesn't hurt to be safe right? Why not go ahead with the test. She also recommended a level two ultrasound which could only be done in Chico or Sacramento. We scheduled that in Chico for December 9th.

My biggest concern was how could I keep 16 ounces of water down for the ultrasound? I was still losing weight due to the HG and hadn't worked in more than a month. December 8th we got a call that our AFP had come back positive for a condition called Trisomy 18. I had never even heard of Trisomy 18 so this phone call was a bit confusing. They explained that the test showed we had a 1 in 19 chance of having a baby with Trisomy 18. Doesn't mean that it is 18 times more likely that our baby was fine? I read the paragraph in the booklet they had given me about Trisomy 18. That was a bit scarier. It described a condition that was fatal. Well, good thing my baby had an 18 times better chance that everything was fine. The doctor told us that the ultrasound the next day should give us a clear indication of how our baby was doing. She said that the physical deformaties associated with trisomy 18 would almost always show up on an ultrasound. My husband and I cried ourselves to sleep that night, though we kept insisting that we were sure our baby was just fine.

December 9, we had our level two ultrasound. We were told we were having a little boy! We were thrilled. We had decided at the beginning of our pregnancy that our baby would be named Jordan whether he was a boy or a girl. Now we knew, he was a little boy. The ultrasound looked perfect. The genetic counselor was pretty sure that Jordan was just fine, but she insisted the only way to know for sure was to have the amnio done. We had been terrified of the idea of an amnio and had decided against it, but she was insisting that it was pretty safe and that our chances of our baby having trisomy 18 were much higher than the chances of anything going wrong with the amnio. We agreed to the amnio.

The next Monday we had our regularly scheduled appointment with our OB. She was reassuring that because the ultrasound looked so good she was sure that Jordan was just fine. Now we just had to wait it out for two weeks to find out the results of our amnio. I hoped to have good news before Christmas. On December 20 at 9:30 pm we got the call from our genetic counselor that shattered our lives. Our son did, in fact, have Trisomy 18. I was crushed. It felt as if all of the air had suddenly been taken from the room. "Is he in any pain?" I asked her. She assured me that he was not. She urged me toward termination our pregnancy. My only reply to her was, "That is not an option for us." She explained that most likely he would be stillborn as 80% of babies with Trisomy 18 are. Of the few who are born alive 90% die before their first birthday. Then she told us to make an appointment to get in to see our regular OB as soon as possible.

My husband and I explained to Zachary that we were very tired and going to bed early. We went back to our room and cried all night long. At one point in the middle of the night my husband came out to the living room and removed Jordan's Christmas gifts from under the tree. I threw up until my throat was raw. How could this horrible condition I had never even heard of take my son away from me? I decided I didn't want to see him. I couldn't see him and go my entire life seeing his little face. I thought maybe someone else could take photos of him, in case some day I did want to see him. I felt like a coffin carrying around a baby who was not going to live. Just waiting for the day to bury him. That brought up new questions. Did we want to bury him or have him cremated? I pictured myself sitting on his grave, wishing I could dig him out with my bare hands. Wondering what he would like if I did. What if I dug him up the day after he was buried? Or what if I dug him up six months later? I dreamed all night of how my baby would look as he decomposed.

The next morning as I woke up, the first sensation I felt was extreme nausea, I ran to the bathroom and threw up. As I was bending over the toilet for my daily good morning vomit, I remembered the phone call we had gotten. I began to cry, and the vomiting only got worse. My throat hurt like sharp glass had been pulled through it.

Watching all of the holiday shoppers happily carrying packages and buying "Baby's First Christmas" gifts knowing that was the only Christmas that Jordan would be in our lives.
We learned a lot, too. We found strength and peace in our Lord. Christmas is an odd season to learn of the impending death of your baby. With Nativity scenes every where you turn and songs about a baby born in a manger, it would be hard to miss the connection. God sent his only Son to this terrible Earth during the Christmas season. He invited our son to go to Paradise. What a contrast, and yet he did his part with an open heart while our hearts were crushing.

Of course our first response to the diagnosis was to pray for a miracle. To say to God, "Ok God I will trust you to heal my son". We thought of how amazing it would be if God chose to use us in a ministry of praying for and seeing the healing of babies!! What an amazing ministry!
The week of New Year's Eve we went to church to hear the message from Isaiah chapter 6 as God asked, “Whom shall I send?” and Isaiah replied, "Here I am Lord Send me." And it hit like a ton of bricks. God was asking us if we could trust him if Jordan died. I knew then that my sweet tiny son would not be with me for long. I responded with "Yes Lord, Here are we, send us."

My husband and I decided not to tell our families until January. We didn't want every Christmas to be marred by the memory of what we had learned this Christmas. We told the kids that Charles had an uncle who was very sick and that we were sad and wondering if he may not live. That way if they saw we had been crying, they wouldn't question it. We only had to last four days then they would be going to their Dad's house for Christmas and the week following.

I called my OB and asked for an appointment to come in and discuss our diagnosis. She said, "I strongly urge you to terminate this pregnancy."

I told her that was not an option for us. This was our much loved and anticipated son, I would fight for his life just as I would any of my other sons.

She called him a pointless nonviable fetus. She said, "IT is just going to die anyway." When I asked for more Zofran for my HG and further time off from work, she stated that I was no longer a candidate for that. I felt like not only my son had been given a death sentence, but me too. I was certain that I attempted to go back to work at the same time as giving up the medication that had been keeping me alive I would surely die. My job involved doing home visits into homes with babies. Most of the homes were very dirty and smelled of feces. I was certain that I would end up vomiting on the floor in the first home I entered. I couldn't imagine walking into homes with young babies as I was still pregnant with my son who was not expected to live.

She told me that if we were refusing to terminate, that she would not see us until our regularly scheduled appointment in January. After that phone call was the first time I begged God to take my life. This prayer continued at least twenty times a day for the next twelve weeks.

January 2, we told our sons about Jordan's condition. They were very sad, and asked what was the best we could hope for. There really wasn't anything to hope for. We hadn't heard of any baby boys who lived longer than a year and only one who lived eleven months. We told our parents and other relatives. Everyone kept asking for the good news, could the tests be wrong, what are the most encouraging stories we had heard of babies with trisomy 18. We kept having to dash everyone's hopes. There was so little to hope for. We were hoping to meet him alive. Even if we only had him for a few minutes, that would be something. My original thoughts of not wanting to see him left pretty quickly. I couldn't wait to see him. I wanted hundreds of photos. I wanted footprints and handprints. I began cherishing every moment of my pregnancy. I would say, "He kicked me today, so today he is here and doing well."

We kept our regular appointment with our doctor on January 14. She repeated her hurtful words to us. She called our son pointless. We told her we wanted to carry him as long as possible. She said she would not offer any more ultrasounds or monitor his health in anyway. We knew we needed to find a new doctor who could help us to meet our son alive.

Soon after a good friend, Shondra, called her OB's office and spoke to one of the women who works there, Bekkah. Shondra told Bekkah our problem and about our OB's lack of compassion. Bekkah told Shondra to have us call and that she would get us in right away with Dr. Williams. I called and spoke with Shondra and she got us in.

Our first time meeting Dr. Williams, I was ready to fight if necessary. I had my list of demands. I had my Mother's heart armed with the strength of ten armies ready to fight for my son's right to live. I listed off my demands and Dr. Williams prayed for us. He shed tears at our hurts. He scheduled two ultrasounds and regular appointments for us to monitor Jordan. He even found a neonatologist willing to help us. Though I must admit I still prayed daily that when God was ready to take Jordan home, he would take me too, I was also able to celebrate the time we had left with him. Dr. Williams was on our side. For the first time I felt a glimmer of hope.