Max’s Story by Eldar Karen
Parents are a child’s most important advocate
Before my wedding day, and even on my wedding day, I thought I knew exactly how the rest of my life would go. I had found a wonderful partner, we would enjoy a few years alone together establishing our married lives and in a few years, we would start a family. Little did I know how different that dream would turn out.
Through fertility help we ended up pregnant with twin girls. We could not have been happier or more excited. We started planning immediately. At approximately nineteen weeks I found out that I was having contractions. I was rushed to the hospital where I would stay for two days before being sent home on modified bed rest. The following week when I went for my now weekly check-up I found out that things had taken a downward turn. I was rushed to the anti-partum department where I found out I would be staying for the remainder of the pregnancy. My pregnancy did not last much longer. My daughters were born eleven days apart and neither came home from the hospital with us. We were devastated. How does this happen? How was it possible that my girls were no longer with us? After months of therapy and medical guidance we were told that IVF would my only option from that point on and that I was not able to carry multiples.
Luckily for us we got pregnant on our first round of IVF with another baby girl. My husband and I thought that our luck was finally turning around! This time we would bring our baby girl home. Needless to say, I drove my OBGYN crazy this pregnancy. I called and went in any time I felt the tiniest bit nervous or felt the littlest inkling that something may be wrong. Although we still felt the pain of missing our eldest daughters, life was great! We had our miracle baby.
When our daughter was eighteen months old we started again with IVF. After a few failed cycles, we got pregnant again! This time a boy. We were overjoyed to have both a boy and a girl.
When my son was around one I started to get baby fever again and had an itch to have one more baby. I came from a family of five (me being the youngest of three) so I knew we had to have one more! After years of talking to my husband about it he finally agreed that we could try one more time. We had three frozen embryos. The deal was that we would go one round. We would ask the fertility practice to defrost all three embryos. If any of them survived, we would ask for the healthiest embryo to be transferred. Wouldn’t you know it, it worked!!!! I was over the moon to know that I would get my third baby!
Our son, Max, was born in August of 2016. He was the perfect final member of our family. As Max grew we quickly realized that he was our child that caught every germ that came into our house. Every family is bound to have one of those kids, right? He had every side effect from vaccines, he had a bad gag reflex and he was a horrible eater. At his first-year checkup I, of course, asked what side effects I should expect since I knew Max would get them. The doctor warned me that fever was most common about a week after the vaccines so I was looking out for it.
Max started with fever three days after his vaccinations. I thought, ok, so he is getting his reaction early. After five days of a low-grade fever I was finally ready to take Max to the doctor. He woke up the next day with no fever! I thought great, we saved ourselves a trip! Then Max started vomiting. We thought it was because we were transitioning him to whole milk. So back to formula we went and the vomiting stopped. Again, we thought we were out of the woods. Over the next few days Max started looking very skinny and he was waking up often during the night “asking” to drink. We also noticed that he was saturating his diapers overnight. We did not think much of this. All of this was over the course of a week or so. Then one morning he woke up lethargic and breathing heavy. I thought to myself he is getting sick again, let’s give it another day and see what happens.
That Sunday our area was preparing for Hurricane Irma. We kept our kids out of the house for most of the day thinking we may be stuck at home for days. At dinner Max started eating, so again, we thought he is starting to get better! On Monday Max woke up breathing heavy again and he started vomiting. I called the pediatrician’s office but they were closing for the day since Hurricane Irma was arriving that afternoon. I scheduled the first appointment for the following morning. That evening I thought Max’s lips looked a little blue, so I called the emergency hotline. I was told that with Max’s symptoms we should take him to the emergency room. My husband took Max since the hurricane was hitting us at that time. The emergency room was very quiet that night. Max’s symptoms of increased drinking, saturating diapers, breathing and more were all notified to the ER. Max was given Zofran and monitored for a short time. My poor baby vomited after getting the Zofran. This meant he failed what is called “the Zofran test.” The doctor told my husband that it was viral and would clear on its own in a few days. My husband asked him if he needed to be on fluids. The doctor said it could go either way and he didn’t think he needed it. My husband came home with a very sick baby.
The next morning, I took Max to the pediatrician as planned. My doctor took one look at Max and said he could not believe that he was sent home from the hospital without having been on fluids or without having had a blood test taken. Max’s lips were so chapped due to him being severely dehydrated even though he was drinking a lot at home! Further along in the check-up my pediatrician said that Max was in Ketosis. He could tell by the fruity smell on his breath.
Ketosis is when the body is in starvation mode! We were sent right back to the emergency room so that Max could be put on fluids. Once we were taken back to a room I complained about the treatment that Max had received the night before. Clearly something was going on with Max that was more than viral. Max had a blood test immediately and was then placed on fluids. We were taken for x-rays to make sure he did not have pneumonia. After about forty-five minutes on fluids our new emergency room doctor walked back into our room with two nurses. Her first question was if anyone in our family had Type 1 Diabetes. My answer was no, but I couldn’t understand why she was asking me. Max’s blood test showed that his sugar levels were over 600 points higher than normal. He was in something called Diabetic Keto Acidosis (DKA). We were being sent to the PICU where they would keep us for a minimum of twenty-four hours. There they would work on slowly lowering Max’s sugar levels with an insulin drip. He would need to be watched very closely to make sure that no swelling on the brain would occur. If that happened, then there would be a very different conversation that would need to happen. We got lucky; Max responded well to treatment and after twenty-four hours we transferred to the pediatric diabetes floor. We stayed in the hospital for the rest of the week to get Max’s sugar levels manageable and to learn how we would need to care for Max once we went home.
Learning to care presented the next set of challenges. Most instructions are not applicable to a one year old with Type 1 Diabetes. In fact, the information from the doctors, nurses and education staff seemed too often contradict one another. This created a significant amount of confusion for us. Compounded by the fact that the endocrinologist attending to Max was fairly non-communicative not only with us, but with the nursing staff as well, we left the hospital without feeling properly prepared.
We are lucky that Max was diagnosed with something that is manageable, but he will have to live with this illness for the rest of his life. In hindsight, it seems so simple that this should have been caught during that first visit to the ER. After all, Type 1 Diabetes can be diagnosed by a simple finger prick. Our poor baby potentially had to endure a lot more than was necessary. While a child at the age of one is very unlikely to have diabetes (typically onset at ages 10-12), we wonder why a standard protocol wasn’t followed.
I am so thankful that I followed my mother’s intuition that led me to take him to the pediatrician after that first ER visit. Throughout our journey as parents, my husband and I have learned that being a parent is never easy and we know our kids best. It’s always best to listen to your gut because sometimes the doctors don’t always know best. Max’s diagnosis could have ended very differently. We are thankful for the treatment he received on the second visit. We are also thankful for our new endocrinologist practice who continually field frantic calls from us at all hours. While technology continues to advance for this illness it all starts with the basics of identification. We hope that our story raises awareness.