“Heaven is much sweeter now that I have a child there.”
Micah Alsup, Trisomy 18, 8/15/2013 – 8/15/2013, Clarkston, MI
We decided it was time for #5. My husband and I have 3 girls and 1 boy and were excited to start the journey of adding another child to our home. I found out I was pregnant in December 2012 and we nicknamed our new addition “sparkle” becuase he or she was probably the size of a sparkle on our Christmas tree.
In January I went through some things to make me think I had mis-carried our baby at 9 weeks. I was sad, but continued to take pregnancy tests because they continued to be positive. I kept my initial Doctor’s appointment because I didn’t know if after a miscariage I needed to do anything – (I had never experienced this before.) We went to see our Doctor on a Friday – my Husband’s birthday – and told the Dr. that I was fairly certian that I had lost the baby. He wanted to see if we could hear a hearbeat just to be sure- and low and behold “sparkle” was beating away! What a blessing – but I was still very confused as to what my body had gone through and I still felt something was wrong. We made an appointment for Monday (12 weeks) to have an ultrasound. I saw that little body moving around and was still in awe that I was pregnant. I noticed the technician was concentrating intently and I was just waiting for her to tell us what was wrong. She said there was a cist on the back of the baby’s neck and my first thought was Down Syndrome. That was fine- I had taken care of T21 adults at a camp in college and was actually excited about caring for one of these loveable people. My husband and I were at complete peace, but didn’t want sparkle to be suffering in any way. The Dr. talked to me about options – but choosing life was the only option in our family. I was handed a pamphlet on T21, T18, and T13. I read the latter 2 and thought how bad those syndromes were, but we were fine with having a Downs baby.
I set a date to take the Maternity 21 blood test. I did not want to do any other invasive tests offered. Our baby was already formed the way God intended and we were going to help this life no matter the outcome of any test. The call came back at 18 weeks that the test showed T18 or Edwards Syndrome. I was a little shocked because I was ok with Downs-not anything else. The Lord and I had a talk and I had to change gears to now care for a T18 child. I had never even heard of this b4 sparkle so I had to do a lot or research — what I found was extremely sad and discouraging. I now had to prepare myself for a possible death and not life. I was picking out funeral clothes and not “coming home” clothes. I didn’t even buy diapers until I knew this baby was coming home. I told my kids and family that we needed to pray for my pregnancy and ask God to intervene. I continued to pray and lean on God for strength. Obviously he thought I could handle this and He gave this child to me for a reason. Every month we would go for a check up as well as an ultra sound – I loved seeing my baby every month. A good friend had told me to constantly thank the Lord that #5 was alive for that day and to dwell on life rather than a possible death. The 3D picutres were awesome and I craved seeing him alive for that day. I loved feeling him move and I would encourage him/her to keep moving and kicking to let mommy know they were alright. I though as long as they were in me I could protect them from anything.
In April we were told that the baby had a large VSD – big hole in the heart- and this would not be the cause of death. All his problems put together would be the cause of death. She told me not to worry and that heart surgery could be done after he/she was 1 years old and fairly healthy for this syndrome. I went home and looked online and there was a 3 year old boy that had the same issues my child had and he seemed to be doing well. I took a big breath and knew we could move on to the next day. In May we met with a neo-natologist and talked about what things would be done after birth. We were going to do all we could to save this child. God could call him home when he was ready – but he gave Dr’s the ability to help and we were going to use their abilities. The one thing that made me sad at that meeting was asking why these types of babies were in pain. I had read and heard stories of this being the case. She said the pain comes from their organs shutting down – not necessarily the cleft palate or clenched fists or rocker bottom feet. I did not like hearing that but wanted to make sure I was well educated on what we could do about that. She was very helpful and encouraging.
We have never found out the sex of our children – We enjoy the surprise. We went back and forth about finding out the sex. We agreed that the outcome would not change and to try and continue on as my other pregnancies and be “surprised” at birth- if it was going to be a precious baby girl or boy growing inside of me. I felt it was a boy. We picked out names and prayed for strength.
In May and June the fluid started building up – never a good sign in a T18 case, but he/she was alive for that day and we were thankful. My sister got married in July when I was 37 weeks and that whole wedding weekend I had not felt the baby move. I didn’t want to go to the Dr’s until after the wedding – I wanted to enjoy still being pregnant and didn’t want to be overcast during a wedding, although inside I was a wreck! Being pregnant and enduring this time is so hard for a mom. Nothing is certain and every minute can be horrible – but you keep on keeping on and continue to wait. I read so many stories of women making it to 36, 37, 38 weeks when the baby passed away – so you can guess what was on my mind constantly. Monday morning I went to my Dr’s and that heart was still beating strongly! What a relief. We had set an induction for Thursday, August 15 although my due date was August 22. I wanted him/her to stay in me and grow as much as they could until they met this world.
Monday, August 12 I had a quick check up and heard that heart still beating – again I could release my breath! I felt him moving all day on Tuesday, August 13 – 2 more days baby – hang on! Wednesday, August 14 was my last day of work and I was anxious all day just knowing that I would go to the hospital that evening and have that baby the next day! I refused to allow “death” thoughts in and pushed them away all day. We got to the hospital around 9:00pm that night. I got settled in my room with my husband and the nurse and resident came in to do an ultrasound to check the position of the baby — He had been breech for 2 weeks and stayed that way. I had seen an ultrasound every month and now knew what I was looking at–The screen was black and white and there was this straight line…..I knew we were looking at the heart but there were no red/blue colors swirling around…..and that straight line kept coming across the screen. I looked at my husband and then at the nurse and I knew. Sparkle’s heart was not beating. The resident continued to do a few more tests and then called in another resident to confirm what we dreaded. After a few minutes of “confirming” She said “unfortunately your baby has passed. I will call your Doctor and we will go from there” I asked my husband if we could now find out the sex of our baby and he said yes. She looked and showed us our little boy, Micah Paul.
I could not cry or talk or swallow. I stared. I wanted to let them know that they needed to get a different machine, because the one they just used was broken, but I could not get that thought to come out in words. I heard a heart beat 2 days ago. I felt him yesterday. His scheduled birthday is tomorrow. My husband was crying softly and I hugged him–My mind was so confused that I could only comfort someone and it was him. My Doctor came and said some kind words and we now changed gears to delivery a body and not a baby. There was now no need to have the neo-natologist team on standby, no rushing around to try and save this baby if the delivery did not go well. Just delivery. Our kids came in the next day – August 15 around 10:30am and we told them that they had a brother and that Micah had gone to heaven already. They would still be able to meet and hold him, but he could not come home with us. My nurses were great-they showed compassion when we needed it and helped me understand what I would expect with a stillborn delivery. I was able to deliver Micah at 11:55am on August 15. He was 4 pounds 4 oz. and 17 1/2 in long. He had all the characteristics of a T18 baby that I had studied. His tiny fingers were “clenched” his feet were “rocker bottom” and he was beautiful! His eyes were closed and his color was darker, but small and perfect….in my eyes. My nurse got a hold of Now I Lay Me Down To Sleep and we were able to get pictures taken of our family. Those pictures are beautiful and I’m grateful for my nurse who told me I would not regret that decision. Our kids got to hold their baby brother. I had my parents and sisters with their families come in and meet and hold him. My husbands family lives out of state, so he made the calls to his family. There were many tears, but also happiness to know that we would see him again one day because we put our trust and faith in Jesus Christ. I was never mad or angry with God – Maybe a little confused, but thankful for my salvation.
We contacted a funeral home to come and get Micah. We had him for 8 hours. I did not realize we could have him for as long as we wanted. I started getting nervous when his body sarted to get worse and thought it would be best to get him to the funeral home, where they would care for him until his service. I now wish I had him longer – but there is no point in thinking about what you “should’ have done. I do encourage other moms who are facing this to study the entire body of your baby. Take pictures of all his/ her features so you can look back and remember the details -hold and kiss them until you are ready to let go. Read books on stillbirths and infant funeral services – even if you don’t experience that situation – it’s best to be prepared as much as you can be. I finally was able to cry the next morning – I woke up from a weird dream and was just wet with tears. My husband held me and we just let it all go.
Micah’s graveside service was 5 days later on August 20. That gave my husband’s family time to come and share in that with us. Both of our Dad’s are pastors and were both able to speak at his service. We said “see you later” to our 5th child and watched as they lowered him into the earth and covered him up. We wanted to get a headstone – which was completed 2 months after his birth. It makes me feel better to go and “see” something when I visit him. Heaven is much sweeter now that I have a child there. The name Micah means “Who is like our God?” The answer is no one–no one can ever be like our great God. We don’t always agree with his decisions, but that does not change his greatness. He has sustained us through our trial.