The worst was yet to come..brain damage?

How to even begin to describe the feeling that I got when I heard that there had been a complication on Mateo’s procedure. I was just getting a cup of tea when the nurse called, and the nurses never call, so I knew this was bad. I ran upstairs to the door where the procedure was being done and dropped to my knees, at this point I was hyperventilating waiting for the nurse to come out and explain what she meant by complication. It seemed like it took forever to have someone come out to speak with us. There was a little window on the door, and all I could see was people getting dressed and rushing into the room where Mateo was having his procedure.

When I saw someone with a bag of blood for a transfusion, I knew it was really bad. Finally a doctor came out to tell us that there had been a complication, that Mateo was very critical and that they were doing everything they could to get him stable. But to hang tight to hear more information. My blood pressure dropped, and I started to cry, I was in complete shock that something so bad could have happened to my precious boy on a procedure that he had been through several times before without any problems. Finally, after what seemed to be an eternity the doctor who was doing the procedure came out to talk to us. We went into her office and she said that he was stable, but that what had happened was very bad. The doctor reported that what had happened was an accidental tear of his left artery while she was trying to dilate it. Because the artery shared a wall with the lung Mateo had a bronchial tear as well. So blood went into his lungs from his artery and air from his lung went into his heart.

Mateo ended up having a cardiac arrest and had to be taken immediately into an emergency open heart surgery in order to close the tear, and save his life. The doctor who operated rushed to have us sign consent and take him into the OR. As we signed the doctor kept repeating the words “this is a very critical operation”, “Mateo is very critical at the movement”, he won’t make it if we don’t operate, as if to prepare us for the worst. That was terrifying. We signed consent and waited, and waited and waited. At this point we didn’t even know what to pray for anymore, that he survive the surgery? That he not have any brain damage from the arrest? That there will be no complications with this emergency surgery? It was so hard to pass the time while we waited.

His cath doctor was watching as the procedure was being done and was able to update us, but with every call we held our breath and had no idea what to expect. The first call: he was able to close the bronchial tear, second call: he is doing well and we are going to try to get him off the bypass machine, the third call: he is okay, the arterial tear is closed and he is stable. We had to wait another two hours to be able to see him.

The team ordered an EEG for Mateo to monitor his brain activity as he suffered a cardiac arrest and there was a chance of a brain injury. The EEG looked fine, but while on it Mateo had a seizure. So a CT scan was order right away, Mateo had the CT scan and the CT looked “normal”. At this point they had him on seizure medication and we did not see any more seizures. We were still in shock and devastated by everything that had happened, what we didn’t know was that the worst was yet to come. Later that day Mateo’s hemoglobin had gone down from 107 to 83 a very strange drop. You typically can only lose hemoglobin if you are bleeding or if you are getting a significant amount of blood taken from you. Since they weren’t taking too much blood, they immediately thought “brain bleed” and my heart stopped. Mateo went into another CT right away and we cried and prayed as we waited. The results…the same as the previous CT, no change at all. A mystery of why the hemoglobin would have dropped so rapidly. Okay, we were able to take another deep breath and continue monitoring Mateo.

On Tuesday August 16th, 5 days after the arrest we got the most unexpected and heartbreaking news. After Mateo went for a head MRI, the neurology team discovered that he had a severe global hypoxic brain injury. What does that mean? Well it means that not only did the lack of oxygen during the arrest affected one part or two parts of the brain, the arrest caused by the accidental tear caused him to have his entire brain affected. When we heard the news and saw the images, we were in disbelief. We asked ourselves, no this can’t be? Did something go wrong with the machine? Truly there is no way that all of the other tests that monitor the brain (EEG and CT) came back fine but then this?? This was when the team said we needed to make a decision…because Mateo would never be the same again. They said to take all of the time we needed, and that we not only needed to think about him but also what this meant for us, as parents. No one wants to hear anyone say these words about your child.

Although my head and heart were in shambles, one thing I knew for sure, and at that exact moment I told the doctors “there is nothing to think about, we will wait to see how Mateo wakes up” we will never give up on him, letting him go is not an option. It tears my heart apart to be a mom of such an incredible little boy, who has filled our lives and the lives of so many with joy, and valuable lessons, and been offered to let him go not only once (in the womb), or twice (when he was in heart failure), but three times.

After that meeting along with the cardiac ICU doctor who has known Mateo since he was a baby, we hugged and we cried. It all seemed so surreal at that moment, like a nightmare I just wanted to wake up from. I couldn’t comprehend how just six days earlier we had been walking and dancing and playing with Mateo, and now we were here. After the shock wore off and we cried and cried along with the cardiac ICU staff for the first week. We started vigorously looking for journal articles, stories, videos, anything that we could find that could help Mateo. First I found this article: https://www.hindawi.com/journals/crit/2013/951827/ and I sent it to Kyle. Then later that night Kyle found this article https://parentsguidecordblood.org/ru/node/18490 when I read it, I knew there was something to be done. So, we told the doctors that we wanted to have meeting and started collecting all of the journal articles we could, family and friends researched and sent us everything that they could find on hypoxic ischemic brain injury including treating this condition with stem cells.

We were able to have a meeting with the cardiac ICU doctors on August 24, and they were able to make an introduce us to a doctor who is the Section Head, Blood and Marrow Transplant/Cellular Therapy, Division of Haematology/Oncology. We had a meeting with this doctor the same day, and we were impressed by their expertise and knowledge about cellular therapy and felt privileged to be able to speak with them. The doctor was able to give us a detailed explanation of what the procedure would be for Mateo and what the process would be from getting the blood, to separating it into various components and making it into what Mateo would need for the stem cell transfusion.The doctor also mentioned that they had previously provided a similar treatment for friends who are doctors and had requested the treatment for their child who had suffered a terrible drowning accident. The doctor mentioned living in the United States and that they knew of Dr. Kurtzberg from Duke University who is one of the pioneers of this specific stem cell therapy on patients who have suffered from severe hypoxic brain injury. However, at the end of the conversation with the Doctor they said that they did not “recommend” the treatment for Mateo, as it is a treatment that has not clinically been proven to have an effect on patients. The doctor explained that when a patient recovers from a severe hypoxic brain injury and has had this treatment it is difficult to tell if the infused “stem cells” were what helped the patient, or if the brain would have healed regardless and the patient would have had the same outcome without the infusion. We were disappointed to hear this. However we were able to speak with but after Kim (Jacks mom from the article above). Kim mentioned that she was in a similar position with Jack, as the state of the science unfortunately was at essentially the same place as it is now. Yet, Jacks doctors at the time did the treatment for Jack on a “compassionate basis” as just like now, there was no clinically approved treatment for this injury. Kyle and I will be reaching out to Mateo’s doctor early next week, to ask if they would be willing to do the treatment for Mateo on a “compassionate” basis.

Please send your prayers, and positive vibes that they will say yes, and that the stem cell treatment is able to be done for Mateo, not because science has proven that it works, but on a compassionate basis, because there are no other options to help him and he deserves a chance. We will keep you all posted on what happens next.

Mateo is a fighter, he is our hero, he is so strong and has overcome all odds, we are sure that we the proper medical treatments, and extensive therapy, Mateo will have a good quality of life. He might never be the same, but we will love him, and protect him, and care for him everyday no matter what.

Thank you so much again for your love and support always, for caring for Mateo and our family. We couldn’t do this without our family, friends, and support tribe! Anita, Kyle, and Mateo