In Memory of Justin Sexton

Categories: Patient Stories

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Justin Sexton’s Blood Clot Story as Told by his Mother Tina Sexton

Justin SextonA little about Justin. He was a loving, kind, helpful, amazing boy. He always loved and wanted to help everyone. He had a heart of gold. He had a great sense of humor, and he loved his family and friends so much. He was a one-of-a kind 11 year-old boy.

Justin loved video games, many boys things, hanging out with his mom, nana, or his grandpa (his BFF [best friend forever]), and his dog Knight. His main love was Legos! He just loved them. He had such a great imagination and creative mind. The things he would think of, and come up with would simply amaze me.

The kind of spirit he had was untouchable, and he touched everyone he met, and left a piece of himself with you. Justin was a strong boy, always loved helping and spending time with me, as well as my parents, with whom he was very close. I was a single mother, and I have been this way since I learned I was pregnant. My parents supported us a lot of the time, helping us and helping me give my son an awesome life. Justin was able to do things that some people never get a chance to do. Justin has been on a cruise, and traveled to Hawaii, Florida (Disney World) and other states on trips with his grandparents. He was always happy and loving. That was my boy.

Now let me tell you a little about his history. Justin had problems with his hips since he was 4. For much of his life, he was not allowed to do many things other children could do. He was restricted from running, sometimes walking, and other very common activities, such as riding a bike, running at school, and most physical activity. He spent a lot of time using crutches, and a wheelchair in school, and many, and many trips thru therapy.

Justin had his first surgery in 2006, when he was just 4. He had what they call Perthes Disease (also called avascular necrosis). This is a condition where the hip socket and bone deteriorate and don’t allow the blood to flow properly so the blood supply is interrupted. After his healing time, Justin seemed to bounce right back to being an active 4 year old. He was okay for a while. As years went on, Justin seemed to constantly have issues with his hips. Doctors would restrict him from activities yet again, and put him back thru therapy, and crutches, and things. This seemed to be his life – on this forever cycle that just repeated itself.

It turned out in 2012 when Justin was 9, he was destined for yet another surgery – this time on his right hip. Doctors thought he had a tear in his labrum (the ring of soft elastic tissue that follows the outside rim of the socket of your hip joint), but when the doctor went in, he had a band of tissue filled with infection that was very tightly pressing on his labrum. Justin spent some time with braces on his legs, more therapy, and the usual things he was went through. He stayed in hospital for a few days.

After this surgery, a few months went by, and something yet again wasn’t right. He was feeling all kinds of pain again in his hip. So, as his mother I made a doctor’s appointment to get him seen. The doctor took X-rays and said he didn’t see anything to be concerned about and he would try therapy once again. We went thru therapy and Justin wasn’t getting better. The doctor ordered him to stay off his hip; he used a wheelchair at school, and crutches at home. I didn’t get answers and the doctor didn’t seem too concerned. I was determined to see what was going on with him so, I sought a second opinion.

After meeting with this second doctor, I was very worried and concerned. I was told my son had a shallow socket and his thigh bone (femur) was not aligned. This was probably why he was having so many problems. The only way to fix this? You guessed it…Surgery.

This brings me to the last and final surgery my son had. He was 11 years old and the time is now 2013. This would be the biggest surgery of them all with a lot of healing and recovery time. My son was going to have a pelvic osteotomy. (a joint preservation operation designed to restore the normal mechanical function of the hip joint.)

Little did I know this surgery was going to change my life so much and so fast. Justin has his surgery on November 12, 2013. He stayed in the hospital for a week. With this kind of surgery, he wasn’t able to move a lot, and he had to be transferred from bed to wheelchair and so forth. He couldn’t ride in a normal car or van. He had to use a wheelchair van with a lift, as he could not sit up straight; he had to lie at a certain angle.

He had his first check up on November 25th.  The doctor gave him a clean bill of health and said he was doing really well. That’s when the worst day of my life happened.

My son was normal all day and all of a sudden, he was having trouble breathing.  He told me he was having a heart attack. I told him “Justin you’re only 11. How do you know what that feels like.” When I said this, little did I know this would be the last time talking to my son. I called an ambulance. They started working on my son and decided to transport him to the hospital. To make matters worse, the ambulance broke down in my driveway! Here I was, all alone in the ambulance, in my driveway, watching my son die. They continued to work on him but it was no use.

That Wednesday, the 27th of November, changed my life forever. My son, my 11 year -old son, passed away. Justin was such a giving and loving person that after he passed I chose to keep his giving spirit up and donate his eyes. His eyes went on to help a man and a woman regain the gift of sight-all because of my son, I know he would want to help someone if he could so I decided to donate his eyes. I know that my son does live on and continues to keep helping people.

After he passed, the autopsy report said it was in fact a blood clot that caused him to pass away; he had a DVT (deep vein thrombosis or leg clot), and a PE (pulmonary embolism or lung clot). They also sent his blood off for tests and they all came back normal. He didn’t have a blood disorder or a condition that made him prone to blood clots. I was told by the doctor and the coroner that this is really rare in children, I was also asked a lot why he didn’t have compression socks or take a blood thinner? His doctor told me they don’t give children that young blood thinners because it can cause further damage, and the compression socks the same story.

As a 34-year-old single mother, I didn’t know anything about this. I didn’t know you could get a blood clot so quickly. I didn’t know a blood clot could happen to children. There was a lot and still is a lot that I don’t know or understand. It is all still very new to me and hard, to have my only son, my heart, my everything pass away the day before Thanksgiving and to have to spend the holidays without him.  He was looking forward to Christmas and to getting a new game for Christmas –  well he thought he would get a new game for Christmas. It has been several months now and it isn’t getting any easier, I miss him as much as I did that day,

After all that I have been through, it makes me really want to bring awareness to others and have them read my son’s story. I want to get involved in awareness and help people learn about blood clots in children. I want to focus on the awareness in children, which is so close to my heart. If I can help educate one person, or tell my story and help someone look for the signs and symptoms of blood clots, and possibly help someone else or someone else’s child, it will not take my pain away or lessen it, but it will help for me to know my son I still helping others.

Take Away Messages:

  • Blood clots do not discriminate – you can get them at any age
  • Children get blood clots
  • Hip surgery puts you at risk for blood clots
  • After hip surgery, your doctor should prescribe anticoagulants (blood thinners) and/or mechanical devices (such as compression hose and mechanical pumps) to prevent you from getting blood clots
  • Following hip surgery, children should have the same preventative treatment as adults with doses adjusted for their needs
  • Learn about the signs and symptoms of blood clots before you or your children have surgery so that you know what to look for and when to seek immediate medical attention
  • Teach your children the signs and symptoms of blood clots so they will tell you if they have leg pain or other early symptoms before they become life threatening
Author: admin

26 Responses to "In Memory of Justin Sexton"

  1. Joanna
    Joanna Posted on July 14, 2014 at 3:38 pm

    I am so sorry for the loss of your precious son, Justin. What a beautiful child inside and out. Thank you for sharing your story and spreading awareness. It’s mind blowing how anyone, at any age, can go through surgery and not be protected from the well-known side effects and potential risks involved after a surgery, ie a blood clot! Makes one wonder how some doctors made it through school and or how they can sleep at night! God Bless you.

    • tina sexton
      tina sexton Posted on March 2, 2015 at 9:59 pm

      Thank you so much for your kind words…. Been real difficult for me and will continue to be….

  2. Doris Cox Meshack
    Doris Cox Meshack Posted on July 16, 2014 at 2:56 pm

    How hard it must have been for you to sit there so helpless and watch your precious baby slip away. Why don’t these so called specialist tell us the important things we need to know? They cut, get paid, and go on about their lives. I truly wonder whether they see us as people. God bless and keep you comforted, and IS thank you so much for the information, and the parts of your son’s life that you shared with us. What a wonderful gift the Lord allowed you to embrace.
    Many blessings to you!

    • tina sexton
      tina sexton Posted on March 2, 2015 at 10:00 pm

      Thank you so much.. Its been a battle and I am still in a dark place and it doesn’t get any easier.. Thanks for the love and kind words

  3. joann whitman
    joann whitman Posted on August 8, 2014 at 2:05 am

    Was recently diagnosed with a blood clot in my leg after surgery.While scouring the web for information I saw Justins story.My heart is breaking for your loss and pain.You were blessed to of had the gift of such a precious child, if only for a short time.Thank you for sharing Justins story & for the work you’re doing to bring awareness about blood clots.Now instead of being upset about having a blood clot I’m grateful for my rapid diagnosis and am hopeful for a positive outcome. I will be praying for you.Stay strong for Justin!

    • tina sexton
      tina sexton Posted on March 2, 2015 at 10:02 pm

      Aww this made me cry…. My boy was amazing… And strong and I moss him so…. I am truly honored that my sons story helped you and I thank you for your words…. I will also be thinking of you and hope everything turns out for you….

  4. alytha
    alytha Posted on August 20, 2014 at 11:26 pm

    Thank you for sharing your pain, i would feel that i am slighting you if i call it your story, i have recently learned that i have a bloodclot on my lung and now i worry about the clot as well as the effects of the medicine. My daughter complains of leg pain and headaches and drs seem to dismiss it, i will press forward to get them to properly diagnose her, she is a very sweet and helpful child like your Justin, thank God you allowed Justin to be helpful because i wont stop until they determine why Jordan is suffering

    • tina sexton
      tina sexton Posted on March 2, 2015 at 10:05 pm

      That’s is what us as mothers do…. Fight and fight some more.. To protect them. I hope all is well with you. As well as your daughter…. I haven’t been on here in a while:( I am in a dark place… But to read all these comments ts on this story and honoring my son, I am seeing it is helping other people and to me that is a honor not only for me, but my son. Thank you

  5. Linda Anglebrandt
    Linda Anglebrandt Posted on August 27, 2014 at 5:35 pm

    My heart goes out to Justin’s Family, especially his Mom! I also watched helplessly as my son died at 19 from Pulmonary Embolisms – Hugs & much love & prayers <3

    • tina sexton
      tina sexton Posted on March 2, 2015 at 10:05 pm

      Thank you for your kind words… And I am sad to say we share something like this in common:( prayers and love sent your way

  6. Samara McAuliffe
    Samara McAuliffe Posted on August 27, 2014 at 6:01 pm

    This story is just heartbreaking- my thoughts are with you. Thank you so much for finding the strength to share.

  7. Danielle
    Danielle Posted on August 27, 2014 at 8:40 pm

    As a survivor myself, my heart just aches for you and your family. You will be in my prayers. Thank you for sharing your Justin’s story. God Bless.

  8. Steve Bouchard
    Steve Bouchard Posted on September 1, 2014 at 12:10 pm

    Rest in peace justin another angel in heaven.

    • tina sexton
      tina sexton Posted on March 2, 2015 at 10:06 pm

      Thank you for this:)

  9. Jung
    Jung Posted on September 6, 2014 at 4:37 am

    I wish I had the right words….I am so sorry that you had to say goodbye to your beautiful child, and I know that he got his beautiful heart from his mom, and that he is with you, and proud of you for being strong and turning your situation into an opportunity to give to others. You are truly a gift to this world, you and Justin, and it is a better place because your feet have walked upon it. I just wish I could take your pain away, all of it….I have learned a lesson from you today, that we must give, even in times of suffering…that we mustn’t forget to love, no matter what….You have touched my life so deeply today. I wish I could hug you, you are a precious angel….

  10. Carol
    Carol Posted on September 9, 2014 at 5:56 pm

    I am so sorry to hear about the loss of your beautiful child. I hope your story does each people that not only can blood clots happen to children but also teach them to always go for second opinions as you did. Because the first Dr. You see may not know what is wrong with your child. I have pain in my legs all the time and I am going for a second opinion because the first Dr. seems to dismiss all my questions. I have learned when you go for a second opinion make sure they work at a different hospital also because that makes a difference. I will keep you in my prayers and God will continue to use your wonderful child Justin to save others. God bless you

  11. Gillian
    Gillian Posted on September 11, 2014 at 8:15 pm

    I am so deeply sorry to hear of the loss of your beautiful son Justin. I can only imagine the pain you must be going through. Thank you for sharing your story and telling us about Justin, he sounded like a truly wonderful young man, a son to be proud of. Hopefully, your story will make more people aware that DVT and blood clots can effect us all, at any time, particularly after surgery.
    Your son would be so proud of you to know that through your pain, you are trying to promote awareness to help others.

  12. Cindy
    Cindy Posted on September 15, 2014 at 6:42 pm

    How does one express the right words to say that you are an amazing, strong, brave, kind soul. I could look through the dictionary and never come up with with words that accurately describe the gift of your life on this earth. I’m glad that Justin is no longer suffering. I don’t say this to, in any way, diminish his pain or his strength while he was alive and well. He sounds like an awesome boy. I’m sorry he didn’t get to enjoy many of the things boys his age do. I’m so happy for him that your parents were such generous,.kind people. Please know that Justin was a mirror of those he shared his life with–you and your parents. Thank you for sharing his story. Thank you for being so generous with Justin’s donation to the family that is able to see through Justin’s eyes–literally and figuratively–how the world can be a rough place but to make the best of it. I’ve recently been diagnosed with an extremely rare blood disorder. I’ve been feeling kind of sorry for myself. Justin’s story inspired me to take the life I do have and do all the good that I can do. Thank you so much for sharing Justin’s story. You are his hero.

  13. Sully Roca
    Sully Roca Posted on September 21, 2014 at 3:41 pm

    I am so sorry for your lost. Your son seemed like a beautiful young man
    ! God has taken another angel. Thank you for sharing his story. Today my 24 year old daughter is in the hospital as I am reading your story. She had gone out with her friends and as she was showering she felt a pain in her leg thinking it was a cramped muscle. She came home and laid down. This morning she woke up with the pain in her leg and it was swollen at the calf, I drove her to the hospital and now they are running all kids of test but they be leave that it is a blood clot. This is very scary. And again my heart goes out to you <3

  14. K M
    K M Posted on September 22, 2014 at 2:37 pm

    So sorry for your loss. I wish you peace and joy under these most challenging of circumstances.

  15. sandrs
    sandrs Posted on September 26, 2014 at 10:20 am

    First I want to say how sorry I am for you losing your lovely son. I see he’s still all around you and will be forever watching over you. It’s a sad shame none of these surgeons had taken the time to educate an treat Justin properly on blood clots. A DVT is what I also suffered an almost lost my leg. The hospital after removing put compression hose on me and 5 yr later im still on blood thinners . Blood clots do not discriminate. Young or old. I feel much malpractice and injustice has taken place here. Justin sweetheart rest in peace. Thank you for being brave and telling your story. It will save many others lives. And sharing a bit of your beautiful son with us. God bless

  16. Tracy Behunin
    Tracy Behunin Posted on September 26, 2014 at 3:12 pm

    Bless you for your willingness to share and my heart goes out to you. My 29 year old son started coughing up blood clots in the hospital a few months ago. He has been meeting with a Hematologist who had him get a CT scan, but for some reason didnt have his legs checked. He’s on both blood thinners now, and it’s still not under control. It’s a very scary condition and not a lot of answers as of yet. God bless you for what you’ve been through – and yet you reach out to us.

  17. Renee
    Renee Posted on September 28, 2014 at 8:15 am

    I am so so sorry for your loss I believe your son is with God he’s not sick anymore he’s healthy and one day you will be reunited with him put your hope in Jesus I said a prayer for you God will heal your pain I’m so sorry keep your eyes on God and knowing you will be with your son again. Bless you god bless you

  18. virginia lindsey
    virginia lindsey Posted on October 1, 2014 at 8:33 pm

    I would like to say, I’m so sorry to hear about your son passing. My heart goes out to you and your family. Also I am a blood clot surviour with multiple blood clots in both lungs. I had open heart surgery because of the blood clots in the veins around my heart. God was with me because the doctors told me and my family that I was going to die.

  19. tam
    tam Posted on November 30, 2014 at 4:18 pm

    My heart breaks for you and for your dear son. There are no words… Thank you for sharing your story in order to help others. Xoxo

  20. Donna
    Donna Posted on March 24, 2016 at 7:48 pm

    I too lost my son Dylan to a PE from a DVT after hip surgery. I too have learned all about this condition and am now fighting the New Zealand medical system for a change in treatment nationwide to stop what has happened to both our sons happening to other sons. Sending you love and strength. Xx