Wednesday, July 30, 2014

Max's Story Part 2: D-day

The week between our first and 2nd ultrasound was fairly easy in retrospect. I was anxious and nervous until I finally got an appointment set but really tried to stay positive. We decided to still announce that we were having baby boy #3 and celebrate that Max was here with us that day. We were trying to be very open with some close friends and family that something may not be right. I even remember saying how honored I would be if God chose me to be a mom of a child with special needs. The idea of a disease that was incompatible with life was on my radar but I quickly dismissed it that Max's condition couldn't be that severe. I told my co-workers on the 29th that I had my ultrasound tomorrow morning but would be back hopefully by 11:30 am.

The night of the 29th Andrew and I sat watching some TV after our boys went to bed. Max was moving and kicking and I had Andrew come sit with me and feel all the life Max had. We talked about the ultrasound for the next day and I remember saying "See Andrew, he is so alive, there can't be anything wrong. My mom intuition says we're just fine".

The next morning we arrived promptly at 8:30 am. The sonographer began her scan. It was very quick, she talked throughout and I had a feeling that everything was fine. She left and said the doctor would be in to talk to us soon. Dr. Thorson was the perinatologist who came to speak with us about 15 minutes later.

That's when our world ended as we knew it....

Dr. Thorson asked us what was the reasoning behind us coming here? Andrew and I explained we were told our baby's femur and humorous was possibly "short and bowed". She nodded and began to explain that Max's long bones (Femur, humorous, rib-cage) were are measuring at about 14 weeks gestation (I was 21 +1) and that she was extremely concerned. She went onto explain that Max's skull was indeed irregular shaped and measuring 23 weeks. His vertebrae were irregular shaped, his hands we flat and his fingers much more short and stubby than normal. She said all of this didn't necessarily mean "fatal" but there was one last big issue. His chest cavity was extreme small (measuring 14 weeks), and was not allowing his lungs to develop. When he was born at full term he would not have the lungs developed enough to breathe or receive any breathing assistance. He was only surviving on the inside while I would breathe for him. As soon as he was born he was going to die.

 Max's diagnosis was fatal.

We were officially diagnosed with a rare skeletal disorder called Thanatophoric Dysplasia. It was caused by a simple fluke in the system. So simple in fact it was just 2 amino acids that swapped places and told Max's bones to stop growing.

 The chances of having a child with this disorder is something close to 1/50,000 and ours was not hereditary, just a mistake in the system.

Seriously, what the hell?

All I remember doing is breaking down and crying my eyes out, Dr. Thorson tried to be as comforting as possible and had the genetics counselor come and meet with us.

We were told that we had a few options, but none involved anything that could save our son. Those options were to deliver now or later. There was no rush and the staff encouraged us to take our time with the decision. Should we choose to carry full term however we would need to elect a c-section due to the irregular growth and shape of Max's skull that would not allow him to pass through naturally and that he would be immediately put into neonatal hospice care if he survived delivery. There is often other complications that arise in TD pregnancies that did pose some risk for mom as well.

We decided to not make any choices that day.

We left the perinatal clinic in shock and confusion. A part of me couldn't stop crying and screaming while another part of me didn't even know what just happened. It felt like a nightmare, except it was real--too real. I just wanted to go to sleep and wake up again hoping it was all a dream.

We went home and immediately called our family and some friends and went to visit our church's Pastor.

The next few days were met with a lot of stress, panic attacks, and haze. I do however, vividly remember waking up in the middle of the night the day after Max's diagnosis. I was laying in bed with my eyes wide open thinking to myself, "something is wrong". I was so groggy though I really could not figure out what was wrong. Then it hit me again like a freight train. This sweet little baby who was moving and kicking was not going to come home with me.

 I went through a lot of limbo with reality. Some days I could not even tell you what was real and what was not anymore. Our church, family, and friends really stepped up for us. Our pastor guided through our decision making process, our friends brought us meals and took our boys to the park while Andrew and I sat and discussed what we wanted to do. Andrew's mom came down on Sunday, June 1st to help us with the boys. My mom came up on Monday, the 2nd to help me cope.

Andrew and I had to make the hardest decision ever.

We decided to go to get a second opinion on Tuesday June 3rd. If the second opinion came back as fatal we were going to induce the pregnancy. There was ALOT of information gathering and understanding that went into this process. A few things we had to understand about carrying Max to term was that if we elected a c-section there was no guarantee I would be able to hold him right away. Considering that he may only have minutes after surviving delivery I did not want to meet him in a cold OR. We also had to make the decision to basically "not resuscitate". Because Max would be born without properly developed lungs there were no breathing machines that could make him more comfortable. Bottom line, if he was born alive he would suffocate to death and nobody could/would help him. (Please understand, there was a lot that went into our decision, these were some of the big issues but really only the tip of the iceberg for us. I can only speak for what was the right decision for our family.)

I just couldn't do it. As a mom I knew watching my baby fight to breathe would be too much. I knew in that moment I would scream for people to help him, and I didn't want my baby to see me like that.

I felt helpless; we felt helpless. There were no options, there was no way out of this mess.

I struggled to understand what could I ever do for Max. How could I make sure he knew I loved him so much and that when he died I wouldn't love him any less? For me, it was the opportunity to labor with him, give birth to him, name him, hold him, kiss him, and love him for just a short amount of time here on Earth. We decided that my mom, our pastor, our doula, Katie and of course Andrew would all be there for delivery. (More on their amazing impact later).

On June 3rd, the perinatal  group at Abbott gave us the same fatal diagnosis so we decided to schedule induction for June 4th.

Andrew and I left Abbott that day and went to Mesa pizza for lunch where we met. We knew this would be the last day Max would be home with us so we tried to make it special. That night we made sure his brothers gave him lots of love and enjoyed laughter and playing with our other 2 sons. Jack came over to me after Parker was put down and asked, "Mommy, can I fall asleep in your arms?" Jack fell asleep with his hand right on my belly. I had never been so at peace. Andrew and I stayed up feeling Max move and kick and told him how much we loved him. That day was filled with laughter, lots of tears, and lots of prayer.

1 comment:

  1. I couldn't read this without crying, Alexis. My heart goes out to you. I don't know if I would have been able to be as strong as you are. Your boys are lucky to have you as their mom.