About

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This blog is to track my journey to a half marathon that I have decided to do to raise awareness of the amazing new born cooling treatment my son received at University college London hospital, and to hopefully raise some money for uclh’s neonatal unit!
My son, Edward, was diagnosed with supra-ventricular tachycardia at an ultrasound when I was 35 weeks pregnant. He was given only 5% chance of surviving. Uclh bought him into the world by emergency c section and took amazing care of him and the rest of my family.
His tachycardia was stubborn and the amazing drs decided to try the cooling treatment. Edwards core temp was reduced to 33.5 by laying him on a cold gel filled mattress. He was cardioverted 7 times in total on 3 separate occasions with in his first week of life. Amazingly, at 10 days old, once he was warm, off the ventilator, off any sedation, I had my first cuddle :) at 2 weeks old I dressed him for the first time :) at 3 weeks old I had him in a cot beside my bed in hospital and by 4 weeks old I finally bought him home :)
Edward has a big sister, joscelyn (4) and a big brother hayden (2) and an amazing daddy who held the fort at home while we were in hospital.
I have never done a half marathon. I’m very unfit. I’m over weight (also known as clinically obese!!!) but I will do this! And so will Edwards daddy!!

21 Responses to “About”

  1. Janel February 15, 2013 at 8:00 pm #

    Hello! A friend of mine just shared your story with me and I wanted to post a reply. Praise GOD that your son is doing well…that is such a scary scary thing to have to go through. My son was diagnosed with SVT when I was only 18 weeks pregnant. They sent me to a specialist and I was put on heart medicine to lower his heart rate. That followed with weekly dr’s appointments, ultrasounds and bloodwork to monitor levels and increase the meds as needed. It was extremely scary. Once he was born he stayed in NICU for a week and they were able to get him on meds to slow his heart rate. He is now 20 months and has been off his heart medicine for approximately 3 months now. I am so grateful that one of my girlfriends had gone through this before me. They didn’t detect her son’s SVT until he was born and it took about 2 weeks before they got his heart rate regulated and he was able to go home. He is now 7 and doing great. I’m just thankfu that I had her to lean on and to learn from. I hope that you do well with your half-marathon and that Edward continues to be healthy! Best of luck!!!

    • c1aire83 February 24, 2013 at 8:10 am #

      Wow! It is amazing what medication can do! I’m so pleased that your baby was born well and your friends baby is. I’m so lucky Edward survived. His little body was fighting so hard while I was still pregnant. Drs believe his heart was skipping in and out of SVT maybe for weeks. I had a 40 minute trace done only a week before that showered his heart to be beating 135bpm! He was tricking us lol.

      X

    • c1aire83 February 24, 2013 at 8:32 am #

      Wow. So pleased you and your friends babies have done so well. X thanks for sharing.

      Please look at our Facebook page. X

      https://www.facebook.com/groups/343308439108865/

  2. Rolf Engleman February 16, 2013 at 12:54 am #

    As an adult about 12 years ago, I had VT while running and was shocked before I even got to the hospital. A few days later, I had an ICD implanted. I used to run 5K’s to marathons and would sometimes get shocked. Four years ago, I had open heart surgery to repair a valve and they also ablated some nerves. Since then, I have not had any more shocks from exercise ,As you know, medical techiques are getting much better. Your boy may eventually get his VT fixed like mine! Good luck!

    • c1aire83 February 24, 2013 at 8:06 am #

      Thank you :) well done on the running. I’m July just appreciating what it takes to run a good distance!
      I’m pleased to hear your condition is under control, sorry u had to have open heart surgery tho!!!
      I wish you well. X

  3. Daniela February 16, 2013 at 8:26 am #

    Good for you mom! Keep my fingers crossed for Edward! I wish you and your family a lot of good health! It’s amazing to save a life and especially a new born! All my respect to the doctors who managed to save his life!

  4. Aimee February 16, 2013 at 8:54 am #

    I am glad someone is finally getting the message out about SVT. I am 21 years old female and after my 19th birthday, I suffered from heart failure due to SVT. It went undiagnosed all my life till my heart could not take it anymore. My heart has been clocked well over 300 bpm. For me, the shots didn’t stop it either, you should look into a heart ablation where they burn the inside of the heart to cut communication off to the broken part. In order to stop mine, that was what they had to do and it was successful. My parents understand what you are going through and the fear it causes. After all, mine happened my very first semester away from home at college. Another one of those important milestones and instead I had my heart stopped 4 times and spent a good month on bed rest. If it doesn’t fix itself, try to have the doctors look into underlining medical conditions. For my SVT, it was triggered by inappropriate sinus tachycardia. Now I am on medication for the sinus tachycardia and my heart was burned. Oh and I have PTSD from the whole experience. The best advice I can give is to never ignore any weird feelings your child may have. For me, when I could feel it, I just felt really hot and like my whole body was buzzing. The feeling itself is hard to describe but it was never painful…just annoying. Freezing didn’t work for me but I am glad your baby responded to it. However, mine was left untreated for 19 years so that didn’t help. It has been 3 years since my heart failure and my body still is adjusting to a slower heart rate. Going from 150 sleeping to 60 is a big leap for my body. It is important that awareness is raised about SVT especially at a young age. As you get older, your body can’t handle it anymore and it can be too late to save yourself. All I had going for me was that I was young enough that my heart was able to keep going through all that. Trust me, nothing is worse than seeing your child’s heart stop because of SVT. My parents still have nightmares; personally I am amazed they even let me go back to college. I wish you the best of luck and remember, trust your instincts and don’t let doctors try to tell you that the increased heart rate can be artifact or white coat syndrome. I wish mine could have been dealt with when I was a baby so that I would not have reached that point of heart failure.

    • c1aire83 February 24, 2013 at 8:00 am #

      Omg! I’m so sorry to hear what u went through. I’m constantly worried about him skipping in and out of SVT. He has recently had a 24 hour heart monitor which I’m hoping will show a lovely sinus rhythm. I have be warned that even if his SVT is clear it may come back when he is a teenager. Thank you for your description of it, I didn’t consider how it might make him feel. I wish you all the best. X

    • c1aire83 February 24, 2013 at 8:30 am #

      Wow u have been through a lot! I’m so sorry u experienced heart failure. Thank you for describing what SVT felt like for u. I have been told Edwards SVT may come back when he is a teenager. Ur description will stay with me!!!
      Thanks for sharing. I’m really pleased your no longer in SVT!!!! And hope you continue to get stronger. X

  5. Melissa February 16, 2013 at 4:01 pm #

    As I read the article in Yahoo News I felt like I was reading my own story. My 4th child was born via emergency c-section at 35 weeks in 2010 because of a heart rate of 300….it came down on it’s own after birth and he was put on flecinide. it wasn’t until a few weeks later that it resurfaced and we spent 2 months in and out of hospital….his body actually went into hypothermia on it’s own at one point leaving the doctors quite mystified. Today he is a very healthy and active 2 1/2 year old. thanks for sharing your story and God bless your family and your journey to the half marathon!

  6. Jo Lamb February 17, 2013 at 5:32 am #

    God bless you Edward!!!

Trackbacks/Pingbacks

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