Our 13 year old girl passed away from a cardiac event

Our little girl passed away in December 2006 from a cardiac event at the age of 13 years. Samantha had a rare chromosome disorder and a bicuspid aortic valve, however, no other similarly diagnosed persons have succumbed; in fact, there are several adults who are developmentally delayed, but otherwise healthy. Almost all individuals have some problems with bowels, constipation and diarrhea that needs to be managed. Our daughter, appearing healthy, experienced a one day illness that stuck suddenly at school: She had been fine, suddenly got pale, began to get gaggy and vomited a couple of times. She rested the day and seemed groggy, but being mainly non-verbal, was unable to express her needs. In reflection with others, we believe she was experiencing headaches. As well, Samantha had been experiencing auras... upon review of medical documentation, this was noted as far back as her 3rd year by professionals, but the condition was not disclosed to us, explored, nor treated. We, parents, and school suspected something must be going on - we would see Samantha momentarily pause in the midst of an activity before resuming what she was doing - and so, our daughter underwent an echo and eeg. The echo was normal and did not show the valve difference (this can only be found on ultrasound; which was performed following cardiac arrest) but we were told it is a common defect and should not be the cause of arrest. The eeg was determined to be "inconclusive" because our little girl grinded her teeth significantly. We were set up for another eeg under anesthesia to give a truer reading, but Samantha arrested the very day before the procedure. We know for sure there was absence seizures because earlier in the month she had an episode in our pediatrician's office that was witnessed by the doctor, a teacher and us and we were to begin treatment immediately following the test. The only clues in hindsight: A few weeks prior to the cardiac event, we found our daughter in the middle of the night, profusely vomiting in her bed. She had not been sick either before sleep, nor following the episode of vomiting. She had also begun to belch more frequently than usual. I strongly believe the seizure activity is tied in to the cardiac event. Our daughter was revived by hospital, but within days, all organs began to fail and we lost her. Our sons, as well as my husband and I were all tested for potential familial cardiac defect (thankfully, none was present.)
This is our story and if the clues are able to help anyone else prevent death, then we feel, there has been a larger purpose to our immense pain and loss.
God Bless,
Velvet
http://www.tetrasomy18p.ca/
"Samantha's Syndrome"

By LauraB
Posted February 14, 2009 at 3:28 am
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My heart goes out to you and your family. I lost my son at the age of 19. There is no greater pain than the loss of a child.
You are a remarkable person who would share her medical history in order to help others.
God has called home a new Angel.
God be with you,
Laura

By tdhssp
Posted February 14, 2009 at 11:09 am
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Thank you all so very much.

Without a doubt, losing one's child is the greatest sadness to ever endure and try to survive. (I am aso terribly sorry for the loss of a son, 19 years old... knowing how it feels: He is still your "baby boy" and is way too young to leave our earth.) I agree, they've gone home to Him. They are still with us as angels surrounding us. There must be a reason they were here such a short time (even if it is not clear to us now.) There is a beautiful saying on a cup that I purchased from a support group called, 'Autism Speaks' which reads: 'An angel gets its wings by helping others find theirs". So, if sharing our little girl's history serves to help others, then the good that might come of it helps me just as much by the peace it brings to me... : )

XO Velvet

http://www.tetrasomy18p.ca/

By foreverinbluejeans
Posted February 18, 2009 at 7:16 pm
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I'm so sorry for your loss. My three sons have a genetic disorder that has a 64% 20 year survival rate. They are 28, 25, and 20 and doing well. They could become very ill very quickly and die. I have the same disorder and we were all diagnosed 20 years ago. It's so strange existing not knowing if one of your children could die today, and it not being a crazy thought.

By tdhssp
Posted February 18, 2009 at 8:14 pm
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Ah, I am so sorry for your family as well! It must be tremendously stressful to live with that knowledge that something could suddenly happen. With us, it was so unexpected... we hadn't a clue! It was terribly frightening when the cardiologist pulled us aside and began to ask questions about whether our sons were 'athletic'. Obviously, they were concerned about something and our sons, indeed, are active and involved in sports. It was a hereditary congenital genetic defect that they were musing over. That was why my husband and I and surviving sons underwent extensive testing following our little girl's death; in order to confirm or rule out anything suspicious. Thankfully, our family tested without incident. I guess if you try to look at things from a positive perspective, at least, you have some information behind you that allows you to make informed choices: For instance, utilizing antibiotics prior to surgery or procedures, refraining from stimulant medications, etc. I wish that all children would be tested for cardiac problems prior to commencing any drugs for such things as ADHD and strenuous sporting activities. Just try to keep faith that God will see you through and protect... that's all we can do; the rest is out of our hands. (((Hugs))) : )

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