In Memory of Dominic Angelo

Our fourth child was born 16 April 2001. He was three weeks early, but seemed to be healthy, weighing in at 6 lbs even. We were in the process of having our first home built, my husband had graduated from the University and we were planning to leave behind student housing and start living in the "real world."


When Dominic was about five weeks old, I noticed some orangish spots in his diaper. It worried me, and I called the pediatrician. The nurse told me it was just urinary crystals and common, so nothing to be concerned about. A few days later I just didn't feel things were right. He seemed too tired and too small. They told me I could bring him in and they'd weigh him for me just to reassure me. When we got there, they put him on the scale and he had only gained a few ounces over his birth weight. They asked me if I could stay and meet with a doctor. Of course!

We were told to start giving him some formula in addition to nursing. We'd do weight checks every few days and see how he did.

We moved into our new home. Developmentally Dominic was progressing, although a little slowly. The doctor we saw before we moved was pretty concerned and made sure we were already connected with a good doctor where we were moving. He made me more nervous that he was that concerned because he has always been pretty laid back, even when I was worried.

The doctor in our new town was pleased with the slow progress Dominic making. He felt it was still within the range of normal, although he was still not happy with his weight gain. He had his nurse, a certified lactation consultant, watch me nurse to make sure latch was going well, etc. They told me to use fenugreek, brewer's yeast, pineapple juice, oatmeal, etc. They gave me formula samples, and told me to nurse and then pump every 1.5hrs day and night. Eventually we got a scale from home health to weigh him before and after feeding. He did have reflux, and the formula seemed to make it worse. We just kept trying to help him grow.



For whatever reason, we started using the nickname "Froggy." We lived our lives as if there was nothing really wrong. We went to the zoo, the waterfalls in the moutains, and just loved and adored our little family. It was stressful focusing so much on feeding and not getting the results we thought we should be getting, but he was growing, and he was making progress developmentally.

I took my two year old for an evaluation at early intervention. She was having a hard time learning to talk. While we were there, the team of therapists had their eye on Dominic. They asked me after the meeting if Dominic had been referred for early intervention. I explained that the doctor wasn't really worried except for his slow weight gain. They told me he really should be holding his head up better and that they felt he could benefit from some help in their program. They set up a home nurse appointment for him.

Dominic kept going in again and again for weight checks and follow-up appointments. We were getting exhausted. The doctor would always say he was doing pretty well, but if he wasn't gaining better the next time they would put him in the hospital to do a bunch of tests and see if they could find what was going on. And the next time would come and he would just say the same thing again even if he hadn't gained any weight.

Finally I was just too tired. I wanted to know how to help my son more than anything. He was such a sweet boy. He seemed to always be happy, and just was a very alert and interactive little boy. It broke my heart to see him so skinny, though I admit at times I thought it was so cute how little he was. I told the doctor that I was ready for him to send him to the hospital and do the tests. Suddenly the doctor back-peddled. He started telling me how it would be so invasive and with how small he was it would be really hard on him. That there were so many possibilities of what could be wrong they wouldn't even know where to start. So he suggested we take him to the out patient lab at the Children's hospital and do a couple of things: a sweat-chloride test to rule out Cystic Fibrosis (which all three of his older siblings had had done, so we figure his would be negative like theirs) and a basic blood panel. The CF test was negative, and the panel was mostly normal except one that was elevated relating to the liver that is not uncommon to see elevated in newborns. So the doctor was content to think there was just some mild delay of no significance.

Dominic actually seemed to be turning a corner. He seemed to be getting stronger, doing more, eating better, and even growing a little better. I took him for his 4mth check up and the doctor wrote on his note we brought home "A+" because he was doing so well. Of course we were still tracking his slow weight gain, but he really was so alert and interactive that the doctors felt confident he was just on the low end of the normal range.

The home health nurse from the early intervention came to our house. I pointed out how weird his ribs looked when he breathed. She thought it looked like some sort of anatomy thing where sometimes the ribs are formed a certain way. I don't remember the term now, but she told me to ask the doctor about it the next time he was seen. You can kind of see what I was seeing in this blurry picture of him, where the center of his chest would just suck down in:

The nurse thought he was looking pretty good, too, but that because he was so small that he would likely qualify for services. She set up the "in take" appointment for September 14, 2001.

On Sunday, September 2nd we were at church and Dominic didn't seem to be doing as well. The meetings ended and on the way into the house he vomited all over. This was not just his normal spit up from reflux. He really vomited. I was worried especially because of his low weight. I took him into the on-call doctor. I mentioned the rib thing, and he told me he didn't think he had that. He said he thought he probably just had some viral thing and that we should give him some tylenol until he felt better. Dominic did NOT have a fever. The doctor told us to follow-up with our regular pediatrician in the morning.

So we took Dominic in on the morning of the 3rd. His regular doctor looked him over and thought he looked fine. He told us to come back on Thursday for another weight-check but figured he probably just had a pretty big spit up the day before. Dominic wasn't vomiting anymore so it made sense.

Now this whole week I was extra worried. I felt that I was going to die. I had been having headaches and just felt a sense of doom hovering over me. And so when on a couple of occasions it appeared to me that Dominic had stopped breathing, I thought I was really losing it when I would see that he was in fact breathing after all. I think the way his chest was caving in when he would breathe was actually a sign he was struggling to breathe. I also believe in hindsight he really was having episodes of apnea at that point, and I was just in denial. This happened at least three times.

We took Dominic in on Thursday. He weighed in at 9lbs. 4oz. Not very much for a nearly five month old who weighed 6lbs at birth. But it was still progress for him. The doctor didn't see any reason to do anything different, so it was just the same old same old of bring him back in for more weight checks, etc.

My husband's company had free tickets to an amusement park. We'd let our family know and they all decided to go on the same day. My mom and step-dad were flying in from out of town, and even my step-sister was here with her daughter from out of town. We had been trying to get our sprinklers done, and since all the family would be in town, we asked for help. We ordered a bunch of pizza based on everyone's response and expected to get them done the night before the big amusement park trip. NO ONE SHOWED UP until it was too dark to do anything, but they helped themselves to the pizza anyway. I was so angry! Here we had helped my sister lay sod while I was still bleeding from delivering Dominic, and this was how they respond? We were exhausted trying to help Dominic, and they just didn't even care.

So the next morning SATURDAY, SEPTEMBER 8th, when everyone was planning on leaving for the amusement park, we stayed home and worked on sprinklers. I didn't want to leave until we had them to a point we couldn't work on them anymore. My family was annoyed that we were ruining their plans of everyone going together. So my mom decided she'd come over and watch Dominic for us, and my brother-in-law did come help a little, too. We didn't leave until early in the afternoon. My mom took a few pictures of Dominic with her digital camera before we left. here is the one we used on his headstone:




In hindsight, I resent my mom for taking all kinds of video of her step-grandchild who lives in the same state as her but NONE of Dominic. Call me cold or bitter, but it hurts that she is still alive and that Dominic died and I have NO video of his smiling, sweet face. We took some video of him while he was on life support and dying, but it just isn't the same Dominic that we got to know in his brief life. But I AM forever grateful for these pictures we got of him.

Within hours of that image being captured , it was all different. I was nursing him on a bench in front of the bumper cars. I had already fed him on the one side. I had him covered with a blanket for modesty. My sister was sitting next to me. She had just announced that she was pregnant (the reason she didn't help with sprinklers). So I was asking her whether she thought it would be a boy or girl. She wasn't sure so I told her I bet it's a boy and then Dominic will have a boy cousin close in age, and how cool that would be. I noticed Dominic had dozed off again (not unusual). So I pulled my bra back together under the blanket, tugged my shirt down, took the blanket off. Dominic began to roll down my arm, which is what he'd do, and then he would startle awake. But this time, he didn't startle at all. He just fell limply. His arms fell down and the weight of them falling kind of jerked him. I instantly said "something's wrong with Dominic" while turning to my sister to hand him to her while I called 911. I was in shock, so please don't comment about how I should have never handed him off.

I watched his pale face and noticed his lips were starting to turn blue. My sister handed him to another sister who started mouth to mouth, and the first sister ran to the first aid station. This was just around the corner from the bumper cars. And EMT (I thought it was just a security guard for the longest time) came and took him from my sister and RAN to the first aid station. I followed, running and watching Dominic's limp arms and legs flopping up and down as he ran. They got him to the first aid station and started CPR. They used the defibrillator over and over and the paramedics were on their way. Dominic was still unresponsive... Not breathing, no pulse. Finally the ambulance arrives and they put him in there. They get some medicine in him. They have to drill into his bones in his legs. They let me ride in the front of the ambulance. And then I felt it. And just as I felt that sweet warm feeling run through me, the paramedic told me, "mom, we have a pulse! It's a faint one, but we have a pulse!" I knew Dominic was back. And I had to hope he was going to stay.

They drove to the nearest hospital then life-flighted him to the Children's hospital. The doctors were sure there was a metabolic problem. They even thought they'd pinpointed it to "Barth's Syndrome." They were doing all kinds of genetic testing, and taking DNA from all the family even for a study. Then airplanes were crashing into buildings. The samples spoiled on Fed Ex trucks that couldn't do anything because all the planes were grounded. They did a skin biopsy, then a muscle biopsy. Then they realized that the muscle looked like he had botulism. We hoped and hoped he would get better, but time showed he had been without oxygen too long. They did do a stool sample before he died and blood test which confirmed he did have infant botulism.

On Friday, September 14th, 2001 Dominic died in our arms. It was the national day of mourning. There is so much more to the story but I've already rambled on and on. Our little boy should be eight years old. All the intensive testing and autopsy revealed nothing more than botulism. It was put as his cause of death on his death certificate. We went and met with the genetics doctor to make sure that there wasn't something to be concerned about with our living children, or any future children, and we were reassured it was just a fluke thing. Tomorrow we'll live through another anniversary of our child's death. This time it was Dominic's little sister. She did not have botulism. For six years we believed Dominic died from infant botulism, but now it is all uncertain and unknown. Doctors believe he did die with botulism, as the evidence is clear that he did actually have it, but they do not believe he died from botulism.

I miss you, little froggy. I wish we could go back to before "real life." I can't describe in words how all these experiences have affected me and my family. Even eight years later. We are not over it and we still grieve. I have been so very weak and exhausted all these weeks. I appreciate those who have left comments and come to check the blog, and I'm sorry I just can't keep up with it. I'm just so emotionally drained. It takes so much to post. I am mostly just copy and pasting this from the angel blog I belong to. I want to share my little son with the world, and this is the only way I can now.