The Life – and Death – of Giovanni Cipriano (Age 14)
As told by his mother, Georgina Cornago
Giovanni was born a happy, healthy baby. I breast-fed him for a little over a year. At around 7 months, we decided to also supplement with formula since it seemed that he wasn’t as satisfied as he used to be with breast milk alone. Finding the right formula was definitely a challenge. He seemed to be allergic to many of the formulas, with reactions including reflux, loose stool, rashes, and what we eventually realized was eczema (for which we were given steroid creams and antihistamines to help with the itching). He developed asthma very early on as well.
As Giovanni grew older, we slowly began to introduce other foods. He loved to eat. I introduced new foods carefully. I would notice some foods gave him red cheeks or reflux and made him cranky, but I didn’t realize these were allergic reactions.
Food Allergies Diagnosed
When Giovanni was around 18 months old, I made chicken with a peanut sauce. After one bite, Giovanni began to get hives, his eyes swelled, he had a runny nose – not the reactions I had seen before. I called our pediatrician, who told me to give Giovanni a dose of antihistamine and bring him in. Once there, our pediatrician said Giovanni must be allergic to peanuts and advised me to keep an eye on him and to give him antihistamine as directed. His symptoms did not get any worse that day, and we left with a referral to an allergist.
After going to the allergist, Giovanni was diagnosed with allergy to peanuts, eggs, cats, dogs, mold, and hay fever. I remember the nurse giving me a prescription for antihistamines and an epinephrine auto-injector and showing me how to use it in case of an emergency. I wasn’t given a food allergy management plan. I don’t remember there being any sense of this as a life-or-death situation – just a diagnosis, prescriptions, and the recommendation that we follow up with our pediatrician.
So from then on, that is what I did. Giovanni’s pediatrician was his “go to” doctor for everything. When we asked about seeing a specialist, our pediatrician stated that he would treat Giovanni first.
Giovanni had a few allergic reactions to peanuts – one from someone giving him a cracker when he was very young and the other was after eating a piece of cake at my husband’s work Christmas party that they reassured him did not have nuts in it, when in fact it did. We never thought these reactions were severe. He would usually vomit, get some hives, and have a bit of scratchy or tingly throat. After a dose of antihistamine, symptoms seemed to calm down and go away on their own. Thinking back, these reactions would be considered anaphylaxis, and were severe.
I followed up with the pediatrician, who said I should give Giovanni antihistamine since his reactions were mild, and he should be okay. We were never told that epinephrine must be used for certain symptoms, only that it could be used if we really thought he needed it. But, since he never had a bad reaction, I didn’t think he needed it. That was the extent of our anaphylaxis management planning.
A Severe Reaction
On October 1, 2013, Giovanni and I were settling in early, happy that homework was finally done early, dinner and chores were done, and we were going to be able to enjoy movie night together – just him and me – for the first time in a while since school had started. Giovanni had just started at Holy Trinity High School, so homework, studying, and sports left little time for relaxing and leisure. We popped the movie in and had our snacks ready. One was a snack mix of mini cookies, pretzels, almonds, and M&M’s. I usually always bypass the full food label and go right to the bottom of the ingredients where they usually have an allergy disclaimer. I had read the back of the bag, and all I saw was “MAY CONTAIN TREE NUTS.” Good, I thought, he is not allergic to tree nuts.
I gave Giovanni a few pieces of snack mix from the bag, but within seconds he was saying, “Oh no, there are peanuts in here!” I said he was wrong and read the ingredients again. Although there was no “peanut” disclaimer, it did actually have peanuts as a main ingredient. I just didn’t read enough! I don’t know how in the world I didn’t see it.
I immediately gave Giovanni a regular dose of antihistamine and said we should go to Premier Care, the after-hours clinic, just to be safe. Then I gave him a second dose of antihistamine just as back up. Giovanni was only feeling a little scratchiness in his throat and was giving me a hard time about getting dressed to go to clinic.
At this point, I should have called 9-1-1.
I said let’s go now, just to be safe. The epinephrine auto-injector was on the table right next to my purse, and Giovanni asked if he should use it. I said I didn’t think we needed to, that we should just get to the doctor. I threw all the meds into my bag and left. On the way out, Giovanni asked if he should vomit, since that is usually what happened in the past. I said if you need to then try, but he couldn’t.
Premier Care is about a seven-minute car ride away. Giovanni was still talking on the drive there. He had his inhaler with him and used it a few times. I kept telling him not be nervous, that he was going to be okay. We got to the office, and it had JUST closed. No one answered the door. Giovanni began to panic. We jumped back in the car and immediately started to look for the epinephrine auto-injector. We couldn’t find it.
At this point, he was still okay. He was still talking, just more scared now. I still was thinking we were okay. Now I had to drive to the emergency room, which was about another seven minutes away. All I could do was focus on getting there without crashing, I was beeping my horn and had my hazard lights on, taking every red light I could safely run and reassuring him every minute that he was going to be okay, that we were almost there, to just hold on another minute.
We were around the corner from the hospital when Giovanni must have felt something serious, and he said, “I can’t mom, I don’t want to die.” I was yelling, “No! No! That’s not going to happen. We’re here. Just hold on. I’m there in two seconds.” He didn’t respond.
I turned down the street to the emergency room and realized he was quiet. I grabbed his hand and said we’re here, but I realized he was cold. I looked at him, and he was blue. I started screaming and beeping as I drove to the emergency room entrance. There were people outside and I was screaming, “Help, my son has peanut allergy. He passed out. I need to get him inside!” They all ran over, and I remember about five of us struggling to get him out of the car. At the same time, emergency room staff came running out with a wheelchair, and we threw him in it. I was just screaming, “Help him, please! He is having an anaphylactic reaction to peanuts.”
Staff were running through hallway, yelling “We need a table now!” as I ran behind screaming “Please, help him!” That was the longest hallway ever. Then these nurses stopped me and took me into a small room while they took Giovanni away, and I had to wait and wait and wait. I had called my husband when we were leaving the house and told him what was happening and that Giovanni was okay. Now I had to call and tell him to get to the ER right away.
It was nearly an hour later when a doctor came out to brief us. She told me how they worked on Giovanni for quite a while, that his heart had stopped and that he had been without oxygen for about 3 minutes, but that they were able to save him. They told me he was on a respirator. I was finally able to see him. He was unconscious and needed to be transported to a pediatric ICU.
Giovanni was in a medically induced coma for several days in hopes of alleviating the trauma caused to his brain from lack of oxygen, but he got worse when they tried to bring him out of the coma. Doctors re-induced him into the coma in hopes that he would recover. But after three weeks of exhausting all measures to try to save him – after many hopes and prayers – Giovanni’s body just couldn’t sustain the injury to his brain, and he passed away on October 18.
I am grateful that I was able to hold my little boy in his bed, along with his dad and his sister, and was surrounded by every one of his closest family members, every one of them holding hands, holding each other up, while he crossed over to finally be in peace.
Giovanni was always a happy little boy. There was always a smile on his face. Giovanni was running from the time he woke up to the time he went to sleep. And even when he was sleeping he was still a restless sleeper. He was a star athlete. He was a best friend. He was the best brother. He was my little boy, my little man. He took care of me, and I took care of him. He was my friend, my partner. He was the reason I did EVERYTHING I did. He was his dad’s pride and joy. His dad is lost without him. He was an honor student. He knew to be helpful, to be of service, to be respectful. He knew how to seize the day and run with it.
Giovanni’s loss is felt not just here in our family, in our community, but all over the country. Giovanni’s loss is awful, it is heart wrenching, it doesn’t make sense. If it has taught us one thing, it is that we know we don’t want anyone to ever have to feel the pain that we feel.
We want to help educate and advocate for all families living with food allergies. We want everyone to know that food allergies are serious. Some people think it’s not that big of a deal, that food allergy parents tend to overreact, and for the simple and lucky reason it hasn’t yet affected them. How many more lives need to be lost to prove it is a big deal?
Food allergies can mean life or death. In the past two months, it has become apparent just how true that statement is. Two more little lives have been taken in our community due to a peanut allergy. More people need to be informed about the dangers of food allergy, including healthcare professionals and parents. If you have a food allergic child, seek consultation with a board certified allergist who has expertise in food allergy. Allergist evaluation and periodic routine follow up are recommended steps in the NIH food allergy guidelines for caring for food allergic children. It is important to do your own research and be your own advocate. Find the very best doctor you can, and even if he’s a little farther away, it may be worth it to go those extra miles. If you advocate for your child and do the research, it is possible that you may be able to help your doctor form the best treatment plan possible for your child. If you are not happy with the treatment or feedback, then find a new doctor. Do not settle! If you reach a point where you are not comfortable with just your primary care physician managing your child’s food allergy, then you have to have a frank discussion with this provider about your desire to involve a food allergy expert in the care.
The most important information we want everyone to know is that when there are signs or symptoms of anaphylaxis, administer your epinephrine auto-injector (such as an Auvi-Q or Epi-Pen). This is the first line of treatment for anaphylaxis! Always have your epinephrine auto-injectors available. It is wise to have two doses available because some people may need a second dose. Do not hesitate to use this when it is needed! It can save a life. Epinephrine use has virtually no downsides or bad side effects beyond increasing the heart rate and blood pressure, and possibly causing some temporary bruising and pain where the device was injected. Most importantly, make sure you have a written anaphylaxis management plan provided by whomever is managing your child’s food allergy. This must be reviewed until you know it like the back of your hand, and you are comfortable with the steps. The physician creating this plan must be able to clearly explain to you what symptoms require antihistamine, and what other ones can only be treated with epinephrine. It is your responsibility to master this plan, and be ready to act should the need arise.
If you should have to treat your child with epinephrine, call 9-1-1! Call your local ambulance service and tell them that a child is having an allergic reaction and may need more epinephrine. (An ambulance should be called not because epinephrine is dangerous but because the allergic reaction could be severe, needed to be treated with epinephrine, and may require more treatment). Even if you are unsure if your child needs the epinephrine, don’t hesitate. Don’t let fear take over. It won’t harm your child if it turns out not to be needed, but it will harm your child if you don’t use it, and it was needed!
Together, we can prevent other lives from being lost. One death is too many! Please join me in supporting FAACT today!