It was around our second week at home that my mom began to make comments about his lack of movement. Miller just didn’t seem to wiggle as much as most newborn babies do. Patrick and I discounted her concern and continued to be thankful for our “laid back” baby. It wasn’t until another week had gone by that Patrick took it upon himself to call our pediatrician and schedule an appointment for Miller. We felt kind of silly taking him in, but were doing it for our own peace of mind. We assumed the doctor would laugh at us and send us on our way. Boy was I wrong. This is a day we will never forget. April 20, 2011 our world was turned upside down. It was the beginning of our life with SMA (Spinal Muscular Atrophy). A disease we had never even heard of changed our lives forever.

As soon as Dr. Schaefer walked in the room, I knew something was wrong with our precious baby boy. He didn’t say much at all, which is abnormal for him. He usually comes bouncing in the room with a big smile on his face saying “HEEEEY…..how’s it going?”, but today was different. I could see the concern in his face. His heart was hurting for us. He knew Miller needed multiple tests and since he knew we were worried sick he recommended that we be admitted to Mercy Hospital. Admitting us would speed the process up and get us answers faster.

We went straight to the hospital and called our parents on the way to fill them in. Patrick’s parents live here local so they came right away and my parents were on vacation in Florida when they got the dreaded phone call, so they caught an early flight and headed home. Something like this is SO hard on the grandparents. I know ultimately it is hardest on Patrick and me as Miller’s parents, but the grandparents have to watch their grandbaby AND their babies suffer. We all just felt so helpless at this point.

Once we were all settled in our room, the testing began. They drew lots of blood for lab work. The first test they did was to test his CPK levels. His levels were extremely elevated. Normal for his age is 75-200 and his were 1800. This immediately indicated something was definitely not right. Because of his obvious lack of muscle tone, combined with the elevated CPK levels, they knew we were looking at a muscular disease of some sort.

At this point, Dr. Schaefer recommended that we take Miller to Arkansas Children’s Hospital in Little Rock. He told us to stay put at Mercy for the night and they would do all of the admittance paperwork for us over night and in the morning Miller would be transported by ambulance. This was the longest night of my life! The waiting was excruciating! I was so anxious to get to Children’s and get answers!

The next morning came and we were on the road to Little Rock. Patrick and I followed the ambulance and made phone calls the whole way down to let our family and friends know what was going on with our sweet baby.

As soon as we got to ACH, Miller’s team of doctors came to examine him. I was so overwhelmed by all of the people. I felt like I was on an episode of Grey’s Anatomy! There were tons of people. Doctors, nurses, residents, interns, social workers, chaplains….the list goes on and on. It was as if they were having class over my baby. Once I calmed down and we got moved to a private room, my nerves were much better! We LOVED all of his doctors! The concern they had for Miller, and the support they showed to Patrick and me, was unbelievable!

We spent the entire next week at Arkansas Children’s Hospital, where Miller received test after test. Lots more blood work, an MRI, an EKG, a muscle biopsy, and an EMG.

The MRI and EKG both came back normal. The muscle biopsy went well and the doctor told us the muscle looked good to the naked eye, but they would have to send the specimen for testing.
The next day was Miller’s EMG (electromyogram) test. An EMG measures the electrical activity of muscle. They gently inserted needles into Miller’s muscles while observing and recording an electrical pattern. Patrick and I were in the room with him while he was having this done. We could tell the doctor wasn’t getting the results she wanted, but assumed this test would be no different than any of the others. We would get the test done and then have to wait for results. Much to our surprise, after the procedure was over, the doctor wheeled her chair over and informed us that our tiny baby had a severe case of SMA Type 1. What? You are giving us a diagnosis? What about consulting the rest of the team? Surely this simple little test can’t give us a definite diagnosis? All of these things were going through mine and Patrick’s heads. That is when Patrick asked the dreaded question…..”So what is his prognosis?” Over the last few days, we had already accepted the fact that our lives would be changed forever and we would be raising a disabled child who would probably never walk, but what she told us next took our breath away. “I am so sorry to tell you, but Miller will most likely not live to see his 1st Birthday.”

Our baby was dying, and there was nothing in the world we could do to save him! Although our hearts were breaking, we remained faithful! We knew we had to stay strong for Miller, AND his 3 year old brother, Cole.

After gaining our composure, we took Miller back to his room. The doctors told us we could go home the next day. We were still waiting on results from the muscle biopsy and genetic testing, but we wouldn’t have those for several more weeks.

The next day we packed up. I couldn’t wait to get our baby boy home and have our family of 4 all under 1 roof again! What I wasn’t prepared for was all of the equipment that had to come with us. I was picturing us coming home to our normal life, but what I quickly learned is that our “normal” wasn’t quite so “normal” anymore. We had to adjust to a “NEW normal.”

Miller was still on oxygen, so we had compressors, oxygen tanks, a pulse ox machine, as well as a suction machine. ACH arranged for Children’s Home Medical to meet us at our house as soon as we got home. They were very helpful in getting all of the equipment hooked up and showing us how to operate it, but as soon as she left, I was numb.

Now I was claustrophobic. I felt like we were back in the hospital room. We couldn’t run to the door if the doorbell rang. We couldn’t take him to his nursery to change his diaper. We couldn’t take him outside. We couldn’t do ANY of these things without a major production. Basically, during the day we were confined to the living room and at night we were confined to our bedroom.

The next week we went in for a check up with Dr. Schaefer. Although Home Health was coming to visit Miller at home, Dr. Schaefer still wanted to follow him every 2 weeks. He gave us GREAT news! He thought Miller could tolerate being off of the oxygen during the day, as long as we hooked him up to his pulse ox machine periodically to check his saturations! This was the relief I needed! I needed some time to breathe.

We were “wireless” for about 5 days, until it was decided that Miller needed to be put back on oxygen. He was just having to work too hard to breath without it. He was breathing between 60-90 times per minute, and normal is 30-60. His normal breathing pattern was equivalent to you or me running on a treadmill all day long! This was hard to watch. I hated seeing him work so hard just to breathe. The only thing that gave me any peace, was reminding myself that he didn’t know any different.

May 11, 2011, we finally got the muscle biopsy and genetic testing results back. They confirmed what the EMG already told us….SMA Type 1. We had already accepted it, but it was hard to hear it all over again. We knew we had some major decisions ahead of us, decisions that no parent should ever have to make.

Through this whole process, Patrick and I have been like minded on all of our decisions. I am so very thankful for that. We both agreed that in Miller’s situation, palliative care was our best option. The word “palliative” means soothing, calming, and pain relieving. What this meant to Patrick and me, was that we were choosing “quality” of life over “quantity” of life. He would use oxygen, we would suction his secretions as needed, and we would insert a feeding tube when he lost the ability to swallow, but we would not trach him. For us, that would have forced Miller to hang on to life that simply wasn’t there. If there was hope for a cure within Miller’s lifetime, we would have done anything and everything we could have to keep him alive. Unfortunately, that wasn’t the case. Yes, we hope and pray there will be a cure one day, and we are personally going to do everything we can to make sure that happens, but it wouldn’t have happened soon enough to save Miller. There are parents out there that make very different decisions than we did, and there is nothing wrong with that. Each parent faced with these decisions has to make them on their own, and you must be able to live with the decisions you make. I can honestly say that Patrick and I have no regrets!

The beginning of June was a busy time for us! We decided that Miller was ready for a feeding tube, and we made the tough decision to switch from Home Health to The Circle of Life Hospice. This was a hard reality to face. Our BABY was on hospice?!?!! That just didn’t sound right! Babies aren’t supposed to die! Even though it was difficult to swallow, it was such a blessing! We knew that assuming we had warning of when Miller’s final days would be, we wanted to be at The Circle of Life. I didn’t think I could handle having those memories at home. The thought of a funeral home coming to our house to pick up our baby was just unbearable. I had so much anxiety every day. I would picture myself holding our baby for the last time and having to hand him over. I worried about how/when it was going to happen. Was he going to suffer? Would Patrick be there? I worried that if Patrick was at work when it happened, he might blame himself, thinking he could have saved him, or blame me, thinking I could have done something more. Knowing your baby is going to die is the weirdest feeling in the world. I never dreamed I would have to plan my own baby’s funeral.

From the time we switched to hospice, to Miller’s death, he had lots of ups and downs. When he was good, he was REAL good, but when he would get bad, he would get REAL bad, REAL fast! When he would get fussy, his oxygen saturation would immediately drop, his heart rate would sky rocket, and he would sweat like crazy! When this would happen, he would panic, which would make him even fussier. It was so scary to watch! He would struggle to breathe when this happened and stare at me with panic in his eyes! It broke my heart! The only way to calm him down when this was happening was to put him up on your shoulder.

Tuesday, June 21, 2011, we had an appointment with Dr. Menendez. The neurologist had recommended that we see a pulmonologist, and even though we didn’t really know what they could do for Miller, we thought we would go to the appointment anyway. I figured they would do a chest x-ray and maybe tell us what level to keep his oxygen at. We got WAY more information than I expected…..

Dr. Menendez was wonderful. Her bedside manner was so calming. She walked in the room and I could immediately tell she was really concerned about Miller. He was really gurgling and working extra hard, so she got to see him at his worst. She prescribed him some medicine to help dry up his secretions and told us not to deep suction him anymore. She said that we should keep his O2 level at 2-3, because even thought his saturation may look good, it would help his comfort level since he was working so hard to breath. She also recommended that we give him his Lorazepam on schedule (every 6 hours) and Morphine (as needed). This was hard for Patrick and me. You don’t like to “drug” our baby, but at the same time we wanted him to be comfortable! That was our biggest prayer! I asked her (as I did EVERY poor doctor that graced our presence) how/when she thought it would happen, and she told us she thought it would be really, really soon. She said she thought the next 48 hours would be crucial.

This hit us hard. I got the same feeling when she told us that as I did the day we were sitting in the room after his EMG when the doctor gave us his diagnosis. I just wasn’t prepared for it. All of the breath was taken out of me. Just when you think all of your tears have been cried, another river opens up.

The very next day, Wednesday, June 22, we decided it was time to go to the hospice house. We knew Miller had taken a turn for the worse and that his days were numbered. Even though we had said from the beginning that we wanted to be at the hospice house when Miller passed, we hesitated when the time actually came. Part of us thought maybe it would be best to just stay at home, but the more we thought about it, we made the tough decision to pack up and head that way.It was so hard to leave the house. I told Patrick that I wanted to sit in his nursery with him and rock him one last time.

Once we got to Circle of Life, we got settled in our room and spent the rest of the day holding Miller and visiting with friends and family that stopped by to see us. Monsignor LeSieur came and gave him Sacrament of Confirmation and Sacrament of the Sick. That was a very special time for us.

Everyone left the Hospice House at around 10:00pm and it was just the 3 of us. Patrick and I decided we would take turns holding him throughout the night. During my 1a-3a shift, I gave him permission to go ahead and go to Heaven. I assured him that we would be okay and that he would feel so much better if he would just LET GO! I knew he was fighting for US! He was working so hard! Patrick took his shift from 3a-5a while I slept. I rolled over at 5:30am and looked over at them. They were both sleeping so soundly and I was SO tired that I just wanted to go back to sleep. I told myself that I should let them sleep and get some rest myself, because tomorrow was going to be a busy day with lots of visitors and I would just hold him all day the next day. I laid back down for a little while, but something told me I needed to get up and take my turn, so I woke them up and we did the switch off. I was in the recliner holding Miller and Patrick climbed into bed to try to get some sleep. As he was laying down, he told me he loved me and then said “I love you, Miller.” Those were the last words little Miller heard his daddy say. I was in and out of sleep with him sleeping on my chest. At one point the nurse came in to give him some medicine and I expressed concern about how shallow his breathing was. (We had taken his pulse ox machine off when we got to hospice, because they are more clinical, so we had no way of really knowing what his saturations were). The nurse said that it was because he was so relaxed and told me that he didn’t have a feeling AT ALL that Miller would pass that night, so I calmed down and went back to sleep. I am so thankful that the nurse told us that, because if he had told us he thought it would be soon, we would have been panicked all night.

When I woke up at 7:36am, I had my hand on his back and I could tell that he wasn’t breathing. I yelled at Patrick to wake up and told him to come over there because I didn’t think Miller was breathing. He came over and put his hand on Miller’s back and we both sat there in silence. We had been warned that he may have episodes of not breathing and then start breathing again, so we didn’t want to rush out and get the nurse, just in case this really wasn’t the end. We didn’t want it to be a chaotic situation, so we just sat. We sat for probably 5 minutes with our hands on his back. He was laying so still on my chest, and my heart was beating so fast, that it almost looked like his heart was beating. I guess his heart was beating through mine.

We finally decided to go get the nurses. Three of them came in. One was listening to his chest. She listened for what seemed like forever! They turned the oxygen machine off so she could hear better. I think the second I heard the silence of the room without machines on, that is when it really hit me! It was silent, and the room was so still. After about 1 minute, the nurse looked at me with tears in her eyes and shook her head. I will never forget that moment.

The nurses told us to take as long as we wanted with him and to let them know when we were ready to have them call the funeral home. Patrick and I held our baby boy and sobbed for probably an hour before we finally told them we were ready. When the funeral home came to pick him up, they told us that it wasn’t required by law that they take him. If we wanted to take him ourselves we could. As strange as that sounds, that was what we wanted to do. As I mentioned earlier, one of my biggest fears was watching him be taken from us. This way, he didn’t get taken from us, we got to drop him off. For whatever reason, that felt better to us.

The nurse came in the room and told us she had all the other patients doors closed and that whenever we were ready, we could leave with him. That was a walk we will never forget. We got to the car and Patrick offered to drive and let me hold him in the back, but I wanted to drive. The last month or so, when we have taken Miller in the car with us, we have sat in the back seat and held him because he couldn’t tolerate his car bed anymore. He couldn’t lay flat because all of the weight put too much pressure on him, making it too hard to breathe. Patrick would always hold him and I would drive, (because I trusted my driving better), so that’s what I wanted to do now. It seemed normal, just like we were going to the doctor or something.

We took our time getting to the funeral home. I have never been in less of a hurry in my life! Once we got there, we carried him in, signed some papers, then handed him over. This is the hardest thing I have ever had to do! The only thing that gave me any peace was reminding myself that he wasn’t there. He was in Heaven looking down on us.

Patrick and I stood in the parking lot, holding each other and sobbing for about 5 minutes before we could pull ourselves together and drive home. On our way home, we stopped by Jim and Rhonda’s to pick up Cole. He was outside playing in the front yard. I went over and picked him up and asked him if he knew where Miller was. He said “in the car?”, I said “no. He said “at home?”, I said “no”. He said “Miller MACNeil in Heabin???”, I said “YES, he’s in Heaven” (he had been telling us for a few weeks that Miller was going to Heaven). We stood there and looked up at the sky together and that was that. He hasn’t asked any more questions. When he asks, we will answer honestly, but in the meantime, we don’t see any reason to overwhelm him with info he isn’t ready for.

We came home to my mom, dad, sister, and cousin. Walking into the house wasn’t as hard as I had imagined. I know having Cole with us helped! I am very OCD, so the first thing I went to do was unpack our bags. I unpacked mine and Patrick’s bags, then went to Millers nursery and started unpacking his bag. It felt so normal to me. I was just going about my business putting up diapers and hanging up clothes when it hit me. It hit me HARD! I broke down crying! My baby boy would never be coming home again. I would never put another diaper on him or dress him in his clothes. The thought was too much to bear!
The funeral home called and asked if we could come back around 3:00 to talk about arrangements. They said if we wanted to bring some things for Miller to have that we could. I asked if we could see him again and they said of course we could! I couldn’t wait so see him again! We took him one of his favorite blankets, his blue dog, and the glow worm that his friend Hudson gave to him before we left Mercy to head to ACH.

When we got to the funeral home we visited about arrangements first, then she went back to get him. We had brought a different outfit for him to wear, so she changed his clothes and wrapped him in his blanket before she brought him to us. He looked so peaceful…..no cords, no wires, no feeding tube! Our precious baby boy was FREE!!! We took turns holding him. We “shhhh’d” him and patted his bottom just like he liked. This was the closure we needed.

Handing him over AGAIN was hard, but the feeling I had when we pulled out of the parking lot was different. My heart still hurt, but I felt more peace.

The next several days, we kept ourselves busy, planning his memorial service and visiting with family and friends that would stop by to see us.

We had his memorial service on what would have been his 3 month birthday, June 28, 2011. It was absolutely beautiful! Everything about it was perfect!

As bad as Miller’s passing was, it was everything we had prayed for. Miller knew what he was doing….he knew that we wanted it to be just the 3 of us when he passed. He knew that our family and friends were going to start coming to visit around 8:00am, so he fought until the very last minute, to give us as much time as we could possibly have. He knew I didn’t want him to pass at night. Everything seems worse when it’s dark outside. He knew we wanted him to go in his sleep, but selfishly I wanted to be holding him when he passed. This way I got both! He knew we couldn’t stand to see him gasp for his last breath, so he went while we were sleeping too. But most of all, Miller KNEW he was LOVED!!!

In that short time he lifted the spirits of many and changed the lives of others forever. He made us understand the true meaning of quality over quantity and gave us a new appreciation for every sunrise we see. He reminded us of how easy it is to take little things for granted, that we should count our blessings daily, and that each day should be lived to the fullest. His life enabled us to experience the amazing power of love through the prayers and support of the countless number of wonderful friends and total strangers that shared this time with us.

The sparkle in those big blue eyes, those long eyelashes and that shy little smile warmed our hearts and leave us with cherished memories never to be forgotten. Even though his time with us was brief, it was wonderful and he did, without doubt, leave his mark.

Patrick and I promised each other AND Miller that we would make the best of this unfortunate situation and NEVER let Miller be forgotten. As part of our commitment, we have started The Miller McNeil Woodruff Foundation. Our goal is to raise awareness, fund research and offer support to other families who are faced with this challenge. We will do this by donating the money we raise to Arkansas Children’s Hospital, Circle of Life Hospice, and FSMA (Families of SMA). - Meredith Woodruff

To learn more about SMA, visit www.curesma.org.