The Nine of Mine

Warning: This post will be addressing the death of my first child. Please proceed reading the full post with caution.

I have had 3 beautiful children. Two boys and one girl, and the girl was planted between the two boys. I mentioned in my first post that my first child died in infancy from a metabolic disorder. He was about 2 1/2 weeks old. Three days before my entire life changed, the first thing I noticed was him being a little fussy and not eating much. I was concerned about his milk intake. I’m glad I was providing breastmilk, exclusively pumping at that time, because I was able to closely monitor how much he was consuming. It was a holiday weekend with the holiday on Monday. The Friday before, I just didn’t feel right. I could not put my finger on it, but something was wrong. Even the dog knew as she would not leave his side except to go outside briefly. I was afraid to wait through the weekend, so I tried to call the pediatrician’s office for an appointment. The message stated the office was closed that day and would remain closed for the following week. Instructions were to call the local hospital, ask for Labor and Delivery to get information for an on-call pediatrician. I did as I was told and scheduled an appointment.

My husband (at the time) and I took our son to the appointment. I had my doubts about the pediatrician because he was the only employee in the office – he checked us in, he took another family into an exam room, he took payments, he cleared the room after the family left, and then took us into another room. He explained he had let all his staff leave early for the holiday weekend since there were only a few appointments. He examined my son and diagnosed a sinus infection. He also pulled dried nasal mucus out my son’s nose, so it was believable all we were dealing with was a simple sinus infection. We left with a prescription for antibiotics and the new parent advice of keep his nose clear because stuffy noses will often make it difficult for a baby to eat. He also said the sinus drainage would make his throat sore.

We did everything we were told, but there was no signs of improvement. He would not eat, so I would take a medicine dropper to give him small amounts much more often than expected feedings. He would not sleep much at all. I called the ER again, and the nurse assured me this was normal for a sinus infection in a newborn. She said to keep doing what I was doing and to take him into a steamy bathroom periodically. I kept trying to put him into his cradle, but it would not last long. His cry clearly told me he was uncomfortable and hurting more when he was away from me. We did this for two days. Saturday night, I held him while watching a fireworks display from the city north of where we live. I remember holding him so much that weekend. I was ignoring the warning from my mother-in-law that he would be spoiled and the insistent advice that I had to put him down to let him cry it out. I remember feeling like I was failing as a mom because I was holding him even more and maybe I would ruin him for life in addition to not being able to magically make him better.

I am fairly certain I slept a little on Sunday during the day because I had stayed up all night Saturday and into the early hours Sunday morning. Exhaustion was starting to set in, but I kept feeding him as much as I could with the medicine dropper and trying a bottle at various times. Sunday passed, and I stayed up with him again that night. Through the weekend, I sang every lullaby to him I could think of over and over until I never wanted to hear or sing them again. As luck would have it, in 2004, television in the very early hours of the morning often had infomercials. I stopped on one in particular – Time Life’s Power of Love collection. That last early morning, he and I created a new lullaby list: “I’ll Always Love You” (Taylor Dayne); “Stuck on You” (Lionel Richie); “I’ve Been Waiting for a Girl Like You” (Foreigner; and that lyric changed to “for a boy like you”); “Endless Love” (Diana Ross & Lionel Richie); “The Time of My Life” (Jennifer Warnes & Bill Medley); and “Never Gonna Let You Go” (Sergio Mendes).

Then came the song I remember the most because he was fixated on me when I sang it. If he started to fuss, all my tired brain could remember is the portion they played on the commercial, but he would become still and very quiet. “Wherever you go, whatever you do, I will be right here waiting on you.” The commercial ended, but the song didn’t. I sang it on repeat for him. Eighteen years later, that “oldie” will come on in a grocery store or when I’m somewhere picking up a station playing 80’s and 90’s music, and I can see him in my mind as vividly as if it was yesterday. I recognize it before the piano even starts.

His dad relieved me a little later, and I retreated to the bedroom to try to sleep a little. I awoke four hours later, and I went to grab my son to change his diaper, happy to see another wet diaper, and to get him a clean outfit. I took him to the changing table in his room. I unsnapped the bottom of the onesie and lifted it up. When I moved my eyes from his face to focus my attention on changing his diaper, my breath caught. The skin across his chest and abdomen had a bluish tint. I called for his dad, and he was at a loss, too. I quickly dressed him and said I was done waiting. I made the decision we were going to our local ER. I grabbed the diaper bag, milk, and medicine, and we left.

We arrived and went through the admission process. They sent us to the waiting room. I have no idea how much time passed because I stared at him, honed in on watching his body move with each breath. We were triaged ahead of others, I’m guessing because he was a newborn. The nurse, a man, was the one to call us back. I don’t recall his name now, but I remember him appearing so huge to me. He was tall and average build for his height. He looked like the scowl on his face was permanent. I immediately told him of the bluish coloring of my son’s skin, and he yells, “He is dehydrated!” as he lifts my son up and carries him out of the room. He yells again, “Call social services!” In that moment, he confirmed I was a failure of a mom. Every thought running through my mind was I should have known…I should have done something…I should have been better. We had no idea where he took our child.

A different nurse came in to speak to us. I provided a detailed account of the events over the past few days, that we sought evaluation and had been giving him an antibiotic for a sinus infection, reviewed how much he had eaten because I was recording it, told her about using the medicine dropper when he would not take a bottle, and every phone call I made to get advice from medical professionals between the appointment with the pediatrician and going to the ER. A lot of what I write will have names changed to protect privacy. I won’t change her name. Julie could see – or maybe sense – my distress and unnecessary guilt, and she reassured me several times that I was doing everything right. I suspect she also influenced what ended up happening with the social worker. I don’t know what the first nurse had said to them, but the social worker never once approached us in any other way than supportive because Julie spoke to her first.

Julie took us to a large room where we waited by ourselves until our preacher and his wife arrived to support us. It was them who prayed over us when Julie came to tell us that our son had coded while they were trying to start an IV. She promised to take us to him as soon as possible, and she returned to fulfill that promise a little while later. My sense of time during all of this is somewhat distorted, but I think it was about 10 minutes. When we entered the room, my heart felt as though it stopped beating and sank into the bottom of my chest. I could not see him for all the people surrounding his bed. One tiny little baby needed so much help. Julie called for me and instructed me to hold his hand and speak to him. She said he needed to hear my voice. His grip on my finger was not quite as strong as it had been, but he would move his head a little toward my voice. His eyes appeared to be searching for me. I kept talking to him for a few minutes, but then I was asked to step away because they needed the space to do more. Julie said I could come back to him just as soon as they finished. I moved out of their way to allow them to work, and he coded again. His father and I moved out of the way, hugging the wall as even more people poured into the room. I heard them say he was back with us again, and then I heard someone say the crew from a well-known children’s hospital was there to take over his care while he was being transported to that hospital about 45 minutes away. Someone ushered us back to the private area where we were waiting so they could prepare him for transport. They mentioned we could follow the ambulance in our car. Inside the room, some distant cousin’s of my husband’s had arrived.

We prayed again, and just as the prayer ended, I heard the door open and turned to see Julie walk into the room. Her eyes were red and tears began to run down her cheeks. There was a man with her. The man was speaking to me, but I kept looking at Julie for some reason. She shook her head at me, and that is when I knew. Suddenly, I hear the man’s words that “he coded again, and we could not resuscitate.” In that moment, I felt a piece of my soul rip away. There was this loud, guttural sound in the room. It took some time before I realized the sounds were coming from me. I do not remember much during this time until we left the hospital. The only thing I remember is getting to hold him one last time. After a few moments, they had to take him from me, and my world went dark.

When a parent loses a child, something happens for a moment. The shock of the loss and the overwhelming grief somewhat freeze you in time. You need to move but can’t. You want to scream, but you’re silent. You look at people, but you don’t see them. You hear noise, but you hear no words. You do not feel the people hug you or rub your back to console you. You do not realize you are crying until someone says something. You feel a numbness you never thought one could feel. Suddenly, life feels empty. Walking out of that hospital with his empty carrier was probably the hardest thing I have ever done.

This blog has taken much longer for me to write. The wound is still there covered by a thin layer of scar tissue, so writing about it in such detail had to be done in small chunks. This is also much longer than I expected it to be, which also contributed to how long I have taken to write it. I had a lot to say but a hard time saying it all at once. Which is okay, but it does tell me that I need to bring this entry to a close because we need a break from the heavy stuff. At least, I do.

Thanks to a medical examiner who relentlessly looked for answers, we were able to confirm our son had Medium Chain Acyl-coA Dehydrogenase Deficiency (MCADD), a rare genetic metabolic condition where a person has problems breaking down fats to use as an energy source. It is treatable, and more is known about it now as compared to when my son was born. In simple terms, someone with this deficiency can become very ill even when they have what is considered a common illness, such as infections or illnesses with vomiting, due to their lack of appetite and being unable to eat. What the medical examiner explained is that he developed the sinus infection. When he stopped eating, his body started trying to break down his fat stores for energy, which the deficiency prevents. The fats built up in his liver, leading to another infection. This infection led to sepsis. It was sepsis that is listed as the cause of death. The medical examiner had my children’s father and me tested to verify we were both carriers of the recessive gene, and we had would have a 25% chance each time we had a baby of the baby having the same deficiency.

I immersed myself in researching as much as I could, and I discovered a website that was so helpful. There were testimonies of other moms who had also lost an infant, and even some with MCADD. This website called savebabies.org provided so much information, including how it was thought that MCADD might actually be accountable for more infant deaths than previously thought due being ruled as SIDS. I was able to view our newborn screening panel. At the time, my state tested for five things. Yes, five. Some states were already testing for 40-50 disorders and diseases. Therefore, I shared my story and discreetly wrote letters. I received standard replies, and I did not know if I was making any progress. However, by the time I found out I was pregnant with my daughter, the panel was expanded to ten. Legislation had passed to add an additional 15 things on the panel, but it would not be in place by the time my daughter was born. For both of my kids born after my first child, I ordered a separate newborn screening panel, called the StepOne Newborn Screening, and paid out of pocket for it. This additional panel screened for 70+ things. If you’re reading this and are expecting, please look at the website to research your state’s newborn screening and consider ordering additional testing if needed.

It is funny how the brain recalls certain information. I was having a conversation with my youngest, also a boy, about memory. He is very bright, and he was talking about how certain things, like smells, are committed to memory. He was surprised when I said I can still remember how his brother smells. I only need a few notes of music to instantly recall his face in perfect detail. There are just some things this mom cannot forget.

We have arrived to my final points. If you are a new parent, hold your baby. If you have toddlers, hold them. As they grow, hold them as much as they will let you. It does not “spoil” them. I ignored those warnings with the two children I had after I lost my son and being held had no adverse effects on their development. Honestly, I believe it benefited them more than what I was advised to do. The second is if you find yourself experiencing a loss such as this, you grieve how you need to grieve as long as you are not harming yourself or being malicious toward others. I plan to discuss grieving in more detail at a later time, so you will understand better why I say grieve however you need to so that you can heal and why you should treat those who are grieving with compassion and grace. Lastly, never ignore your instincts as a mother. I never did again.