In memory of
Lavon Deshawn Williams
10/09/2020 – 04/20/2021
When I found out I was pregnant the first time, my mother-in-law was the one who told me about an Ob/Gyn. I wasn’t taught about it and I didn’t understand that I needed one until then. She said to me, “That’s the doctor I go to, so go ahead and go to them.” So I went to the doctor, I just been with that doctor for all my pregnancies.
I never really talked to my parents about being prepared to give birth or childbearing. At that time, I wasn’t old enough to have kids. I was 18 when I got pregnant. Going through the experience was basically how I learned about it.
Before I got pregnant with my son, I had three miscarriages and a lady told me that I had to go see a better doctor. She said I could get testing to see why I had so many miscarriages, but when I went to the doctor to get tested, I found out I was pregnant.
This time around, I knew something was wrong with my pregnancy because my son wasn’t moving as much. We still ended up moving along with the pregnancy. After a month or so, they end up telling me that my son’s brain had fluid in it. The fluid that’s supposed to go through the ventricles, it was still there.
They told me that it’s a possibility that my child might be a little slow in development. Not retardation or anything like that, but just as far as might take a little time to read, might take a little time to write and I was okay with that. After that diagnosis, that’s all I was doing, I was constantly going to the hospital and getting tests done. All the tests that I took came back negative. So I was happy. And then, after all of that, I ended up telling my husband, “Hey, I’m having contractions. Something not right.” Mind you, I was only 35 weeks.
I go to the hospital. They said I was a centimeter dilated. The lady told me no fluid is leaking from my water bag, and that if there’s no bleeding, I don’t need to be there.
The very next day, in the early morning, around three o’clock in the morning, I said, “No, I got to go to the hospital.” Once I got to the hospital, the lady checked me. Before I know it, I had hella nurses and doctors coming in and I’m like, “Hey, what’s going on?” I had one nurse on the left side taking off my bra, the other on right trying to take off my pants. I was like, “Why? What’s going on?” They were like, “You’re 10 centimeters dilated and we have to prep you for a C-section.” And I’m like, “But it’s not time.”
They said there’s nothing they can do. They didn’t even offer try to stop the whole birth process. So I was like, “Okay.”
I never made it to 10 centimeters with none of my kids. I only made it to 10 centimeters with Lavon. That was my baby name. And it was horrible. Oh, I don’t know how people do it. That evening I woke up and I didn’t really see my son because I was still high off the anesthesia. Then when I was ready to see my son, they ended up telling me that he was in NICU. After about three days of me being in the hospital, they told me I had to go home. He stayed in the NICU.
A month later they tell us, “We don’t know what’s going on with your son.” They told me at first that it was my milk. “Oh, it’s your milk. It has too much calcium in it and it’s breaking down his bones,” they said. I was like, “What?” I didn’t really understand it when they said breaking down the bone. So that discouraged me from pumping. It stopped me all the way. After that, they called me and my husband. They still said, “Hey, we can’t find out what’s wrong with your son. The only thing that’s keeping your son alive right now is sugar water.” They said that the only way to keep him alive was to send him to San Francisco.
When that happened, I had told them I couldn’t make it out there right away, because I had my other kids. It wasn’t easy for me just to get up. I had three other kids. So then I was like, “Okay, after Thanksgiving, I’ll come,” but boom, the doctors at UCSF end up finding out what was wrong with my son.
The way I found out what was wrong with Lavon was through an email. And the email came through and I read it. And I’m like, “What?” You know how you scan emails? You don’t really read it, but you go through it super fast. And the only thing I seen was something along the lines of, “How are we going to give the family this devastating news?” And I’m like, “Devastating?”. So emailed them. I said, “Hey, this is Lavon’s mom.” I said, “Somebody needs to call me as soon as possible.” I was scared. I didn’t know what was going on. A lady ended up calling me and they told me that my son had Arthrogryposis-renal dysfunction-cholestasis or ARC syndrome and Fanconi syndrome. And once they told me that, they basically told me that my son wasn’t going to make it.
My whole point was just to get my baby home. I didn’t really care for the diagnosis. I cared, but I just wanted Lavon home. I wanted my kids to see him. I wanted my sisters and my family to see my son.
They told me he was deaf. I believe that part because certain stuff in my house that’ll make a loud noise, he wouldn’t jump. So I knew something was wrong because, you know, when a baby is sleeping and you slam a door, they startle. He didn’t do anything like that.
But I was ready. I had faith in God. Even though my faith did not drift away, my faith was up and down in the beginning. I didn’t understand it, but I was ready. I was ready to take that ride. I was ready to learn sign language. I was ready, honestly. It was like, I thought about it as an adventure, something I never been through, but now it’s going to be something that I could learn.
When my son was born, everything they told me, I pushed to the back of my head. My baby is just a baby. He was just smaller than any other baby. He was so little. Little, little, tiny little thing, fell asleep on my chest. What happened next was just horrible, so one thing I would change is my son having a rare disorder.
Finally, my baby came home. He stayed home for, I’d say, a month and a half. February 17th was when my world turned upside down. That night I knew something was wrong. My baby wasn’t drinking his milk. And I was like, “What’s going on?”. He would drink but throw everything up right after. So then my husband took him. He tried to put him to sleep. He said, “Hey, babe, Lavon is not going to sleep.” I said, “Give him here and let me do it,” because we, moms, we got that touch. My baby wasn’t going to sleep, so I said, “No, I have to go to the hospital.”
When we got there, the doctor said, “Oh, your son is a severely dehydrated.” And they end up telling me the baby was suffering from the rhinovirus. Now, I’m familiar with the rhinovirus. All three of my kids had it because it’s contagious. They was all like, “All we are going to do was put him on the albuterol, give him the steroids, the medicine that he needs to get him better.”
So I said, “So how long does this take?” They said, “Well, right now this is the first stage. The first stage starts now. Then it’s the second stage, which is worse. Then it’s the third, which is worse, but it becomes better.” We went through all them stages, nothing got better. Then, they have to send my son back to San Francisco again.
And then the doctors out in San Francisco ended up calling me and said, “We need you to come out here as soon as possible.” We rushed out there. Me and my husband basically put our other kids on hold. We was out there for a month and a half. And basically, they did everything they could. I don’t want to say that they just gave up on my son. You get what I’m saying? Because of that weird disorder, they gave up on my son and they said it. My baby was always high off of medicine.
They basically wanted me and my husband to pull the plug out there. And I said, “No, I’m not doing that. I’m not pulling the plug out here. We’re all the way in San Francisco.” I need my kids. I need my sisters to be here. My family need to see him again. He was only home for a month and a half. Majority of his life he was in the hospital.
He was just not looking good. And basically they wasn’t doing nothing else for my son. He was on 20 medications. He was constantly using the bathroom. My baby was suffering. And when I looked at him, I was just like, “Oh my God.” His eyes was so big. And when I looked at him, all I seen was big yellow eyes.
And I picked my son up and I haven’t picked my son up in a month. He was six months old and he was so heavy and I put him in my arms and I just looked at him and I told him that I love him so much. And I explained to him that I’m sorry that mommy couldn’t save you and wasn’t nothing I could do.
Before you know it, my son took his last breath and he was gone and that was the end of it. And now I’m continuing to live with it every day and it’s not easy at all, but I thank God I’m able get through it and to even tell you about it.
The only thing that they have is asthma and sickle cell. My son is a severe asthmatic because me and his dad, well, we both had asthma. And then my two girls, they have asthma too, but it only acts up when they get sick and they have sickle cell. So those are the only real thing that my kids really got.
That’s why I didn’t understand how ARC came about. I don’t even have nobody in my family had a baby with ARC syndrome. Not even my husband. I’m just thinking, where did this come from? And they tested the gene mutation out. If it was a gene mutation, if I’m saying that right, why none of my other kids had it? It just didn’t make sense to me and it still don’t make sense to me.
And I had my husband, who plays the big part. I got my three kids who play the biggest part. I have my sisters, my therapist, Xavier, and I had some family members reach out. But I thank God that I had the support I had because if I was somebody to go through this by themself, I would’ve took my life.