We were recently lucky enough to speak to Cazandra Campos-MacDonald, who has two sons with severe haemophilia A and is a healthcare advocate with a passion for writing, public speaking, and ministry. She is a keynote speaker, and she gave an incredibly moving TED Talk on her experience of being a mother to sons with haemophilia A and inhibitors (link below). Cazandra has written over 800 blog posts and is currently a weekly columnist for Hemophilia News Today, a US-based website that provides guidance on all things haemophilia-related. In addition to this she has written a book entitled “Dear Hemophilia: Finding Hope Though Chronic Illness”, which is a personal memoir depicting her life raising two sons with severe haemophilia A and inhibitors.
Haemophilia A is a rare blood-clotting disorder which is caused by insufficient factor VIII. When people with haemophilia A receive factor VIII treatment, they often develop inhibitors, which are antibodies that target factor VIII, stopping their treatment from working.
Her eldest son, Julian, is 24 and lives away from home and her youngest son, Caeleb, is 15, and lives with Cazandra and her husband in New Mexico, US. Both of her sons have severe haemophilia A, but Caeleb’s is debilitating and much more severe in comparison.
We’d like to thank Cazandra so much for taking the time out of her busy schedule to speak to us and help us get a better understanding of what life is like supporting children with severe haemophilia A.
Can you tell us a little about your childhood and how old you were when you first learned about what haemophilia was?
I did not learn about haemophilia until my first son, Julian, was born, when he wouldn’t stop bleeding after his circumcision. My brother died of complications, and after Julian was diagnosed, my mum suggested that maybe my brother had had haemophilia, but it was forgotten about until my second son was born and diagnosed with haemophilia. That is when we realised it was familial.
What was it like for you witnessing your children live with haemophilia?
Devastating. I didn’t know anything about it. When Julian was born, I thought it wasn’t inherited. In at least 30% of haemophilia cases there is no known family history, and many of these cases are caused by spontaneous mutations. I just tried to figure it out as we went along. Julian’s condition was easier than Caeleb’s because although he had developed an inhibitor, it was textbook and easy to treat. I felt very fortunate that it was easier with Julian. The second diagnosis was much more devastating than the first. This is because I thought Julian’s haemophilia was due to a random, spontaneous mutation and I didn’t think that I was a carrier, so it was a shock when Caeleb was also diagnosed with haemophilia. Caeleb had a very high inhibitor titer at 11 months old: it was so high that initially they couldn’t treat him, and we just had to wait. Everything that could happen, happened to Caeleb. As well as developing inhibitors, he also developed an allergy to factor VIII and had a terrible needle-phobia. He went through 7 ports for therapy delivery, whereas Julian had only one. Caeleb lost mobility for a year in his second grade and had to have wheelchairs and walkers and was in and out of hospitals for an entire year. There were episodes where he was screaming in pain for nights on end, even after being given morphine. I was always living in fear of him telling me that his ankle or his knee hurts, showing he was having internal bleeding.
What kind of burdens did haemophilia cause you and your children? Did they have to miss out on playing sports?
Our kids are very musical. They are luckily just not sports people and didn’t really want to get involved in team sports. We encourage creativity, art and music instead. Caeleb would like to play basketball but he just can’t because of all the damage to his body: he walks with a limp and is in a lot of pain. Fortunately, it was not something he wanted so badly to make it happen. It wasn’t really possible for Caeleb to ride a bike until he was about 11, and when he was around 12 years old, he could finally go out and shoot hoops, due to improved treatment. We have gratitude that he is even able to walk to piano lessons and go outside and shoot hoops occasionally.
Caeleb initially missed a lot of school, and fourth grade was the first year that he had a normal year, meaning he went to school and he came home at the normal times. He didn’t have the social part of school before this year. He was a bit behind academically, but mostly socially, as he hadn’t been able to be in class with friends and so that was a big learning curve for him.
Did it have an impact on your relationships with your friends and family?
I have been with my husband for 30 years, and the year that Caeleb was able to have a normal school year, we realised we didn’t know who we were anymore. We had lost touch. We were living in a 2-storey house at the time, and everyone would be in their own corner of the house and mum and dad were always going to and from the hospital, trying to keep Julian & Caeleb in school. But who were we when we were at home? It took a lot of intentional work to figure that out. There are high rates of divorce when you have a child dealing with a chronic illness such as haemophilia. Relationships can often suffer and take a back seat.
With our friends, people knew that we had to run out on things because of haemophilia. People understood, which made it easier: we didn’t have to explain.
What is the relationship between your sons like? Has Julian helped Caeleb at all, having gone through a similar experience beforehand?
The relationship between my sons was unique. Probably due to the 10 year age gap, there was no sibling rivalry because of their conditions. They are so different as well, and Julian would worry this would mean they were never going to get close. There were times when Caeleb was in the hospital and Julian would go and talk to him and try to calm him down, which was sometimes very helpful. But it was difficult for Julian because he didn’t experience the same trauma that Caeleb did, but he did the best he could to help.
How is Julian doing away from home?
He is studying in college and works in a coffee shop part-time. He does everything for himself, and he’s working out and taking care of himself. He’s a theatre person, a musician. He had got an internship in Germany, but it got cancelled because of COVID. It’s now going ahead in the US, which is a bit disappointing as he really wanted to travel. He can do all the lifting boxes and cleaning at work, and he does a good job of taking care of his haemophilia. Initially when he first moved out he was a bit careless and got into some trouble with his bleeds, but this taught him the importance of taking care of his haemophilia and it was important he learnt that on his own.
Are you worried about Caeleb leaving home? And how has the pandemic affected him?
No, I can’t wait! Caeleb said recently “Mum, 3 more years and I’m going to college!” Julian leaving was harder actually, because he didn’t know what it was like to have a serious bleed and be in bed for days. Caeleb does. It’s important that he’s learned that. Because his haemophilia is so severe, he should be more in tune with his treatment as he doesn’t want to go backwards, and so I’m less worried about him treating himself when he leaves home. Caeleb’s treatment hasn’t really been affected by the pandemic, but school has been online for a year. We have only just moved here this summer so he’s been the new kid as well which has been hard. It’s nice to not have to deal with any medical problems though!
What are some of your most prominent memories of how haemophilia affected your children’s childhoods?
Haemophilia summer camp sticks in my mind. Kids with blood disorders go for the summer and learn how to deal with it and treat themselves and have a lot of fun. They do everything they can to make sure the kids can experience everything as much as possible. But because of COVID, Caeleb couldn’t go last year.
It’s been about 7 years since we were having to be in the hospital all the time and I try to focus on the positives. However, one of the worst memories is when Caeleb was in hospital and he had so much medication that he almost stopped breathing one night. It was a very very scary night and it took a while to get over that and heal. One reason I share my story so much is because it’s too easy for us to feel alone when you see your kids like that.
What helped to give you and your boys hope in trying times?
Faith plays a huge part in our life. I took it moment by moment, breath by breath. You have to focus on the small improvements. When things are really bad you can’t focus on the next 2 years, or even the next week. Our experience with Caeleb is not the norm as he has such severe haemophilia. A lot of the hope came from just seeing some of the other people with haemophilia and being with that community. There’s a bleeding disorder chapter in every State in the US and our doctor helped us get in touch. When Julian was diagnosed, a mother of a boy with a bleeding disorder called me to say it was going to be okay, which meant more than when any doctor said it was going to be okay. I believe voices from families are what we need to hear more often.
My husband and I go to national meetings and workshops where we hear about experiences of doctors and consumers. I think the best way to impart hope is by sharing your story. The nurses and technicians who’ve helped us are amazing. They don’t only do their jobs, they develop relationships. I have gained a lot of hope from our caregivers in the hospital and from those who are living the same kind of experience as us. I also get hope from seeing new products come out that work – it’s amazing to see the progression of medicines and the impact they have on your child and your whole family.
How did you come to start becoming a speaker and what inspired you to do a TED talk?
I’m in my third career now. My first career was a band director where I became an entertainer to some extent. Later, after experiencing haemophilia in my children, I realised the power of sharing. A year after Julian was born a paediatrician called me and said they had delivered another baby with haemophilia and asked if I could speak to the mother as she was so freaked out. I thought ‘OMG, I can help this woman’. Sharing is so powerful. I then moved into a second career, which was in the bleeding disorder industry. I worked for a home infusion company for 13 years and got more opportunities to start speaking to corporates to explain that people with haemophilia aren’t just statistics but are people. I’m passionate about making sure that higher ups understand what they are doing and why. As for my third and current career, I am a United Methodist pastor, but I still speak and write about haemophilia regularly. I did an online talk for a group last week and it was one of the most fulfilling parts of my week. In 2015 I started writing for The Mighty, an online site where people write about all kinds of diseases and conditions and share stories. I wrote my first article when I saw that the prompt for writers was ‘if you are going to write a letter to your disorder, what would you write?’ I stopped what I was doing and began to write… ‘Dear haemophilia…’ and spoke about the inhibitor. Then after that article of mine got published I thought ‘hmm… one day I could probably write a book’, and so I did! An opportunity came up about selecting speakers for a TED talk. I submitted because why not? And it got selected! It was the first TED talk about haemophilia. If one person hears that you can have an inhibitor and can live a full, happy life, it can change things for them. The TED talk, as well as talking to the community and sharing experiences, is an opportunity to start sharing hope with others.
Cazandra’s book is available to buy here:
https://www.amazon.com/dp/1944613447/ref=sr_1_1?keywords=dear+hemophilia&qid=1574546941&sr=8-1
To watch Cazandra’s TED talk click this link:
https://www.youtube.com/watch?v=kyS8HOl0VAs
If you want to read more from Cazandra visit her website:
https://cazandracmacdonald.com/
And read her blogs about haemophilia:
https://hemophilianewstoday.com/author/cazandra-campos-macdonald/
