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24 November 2009
I would like to share my story as a means of awareness and grief process for our family. Early this summer our 11-year old daughter, Sofia, had been complaining of headaches with changes in her behavior; very fatigued, snappy and moody---my wife and I simply thought this was part of pre-teen behavior; hormones and a little stress as she had just finished a good school year as an A-B Honor Roll Student, volleyball player and a dedicated participant of the school News Crew. We were confused about her symptoms because she liked to read in the dark (we constantly warned her about her eyes and headaches) and would complain of headaches right after spending hours on the phone giggling and singing with her friends. We simply thought she was what my wife called "playing the stay-up game" refusing to go to bed early because the school year had just ended. April of 2009 Sofia was diagnosed with severe allergies so again we thought her fatigue and headaches were being triggered by her allergies. However; the morning of July 8th our daughter woke-up more swollen and fatigued than usual so later that day we visited her Pediatrician who could not determine any illness that would warrant going to the ER or prescribe medications. Hence; Pediatrician suggested making follow-up appointments with the optometrist and allergist due to reading in the dark and severe allergies.
July 9th; Sofia woke me up at 7:30AM complaining of a very sharp headache, feeling nauseas, lethargic and spots in her vision. We immediately called her pediatrician who suggested taking Sofia directly to Wolfson Children's Hospital in Jacksonville, FL. Sofia was so weak I had to carry her to the van and strap her in. My wife arrived at Wolfson at approximately 10AM and by 10:45 Sofia was wheeled to CAT scan where by 11:45 AM the ER physician had determined a large mass (2.3cm in diameter ) in the posterior left side of her brain stemming off the occipital Artery---this alerted the pediatric Neurosurgeon team to evaluate for a potential aneurysm or tumor. By 4:45 PM the MRI/MRA had been completed and Wolfson Pediatric Neuro-Surgeons consulted with an eminent Neuro-Interventionist at Mayo Clinic who treats aneurysms in children. Because the CT scan and MRI/MRA did not show any evidence of bleeding, the plan was to have Sofia in the PICU for observation until the next morning; when she would undergo a conventional angiogram to define the aneurysm for possible coiling and or other intervention type.
Sofia's symptoms worsened in the PICU and at approximately 9:35PM she held her head in a fetal position and screamed "oh my God" twice followed by seizures, vomiting and coma. The PICU team immediately stabilized her and wheeled her to CAT scan where bleeding was evident and draining was needed to relieve intracranial pressures. The next day Sofia underwent coiling to stop further bleeding and to remove a clot contributing to her uncontrollable intracranial pressures. Sofia's condition only worsened and after 9-roller coasting days her pupils went into fixed dilation July 18th at 11:11PM.
A month after my daughter's passing, since we had learned that Aneurysms could be congenial, my wife, our four-year old and I got MRI's; my wife and 4-year old daughter were cleared of aneurysms---thank-God! I was not so lucky; my MRI depicted a 7mm aneurysm in the right anterior side of my brain behind my right eye. Although I was out of danger, my Family Practitioner suggested I undergo elective coiling as soon as possible. I was coiled at Mayo Clinic in Jacksonville, FL and my recovery seemed to be going very well. I was discharged the next day and was ordered to relax with minimum or strenuous activity for at least a couple of weeks. Five days later I began feeling better so I decided to drive to Home depot; I was walking toward the cashier to check-out when my legs began to feel very heavy and everything around me began to spin. I was panicking thinking the aneurysm was bleeding so I immediately rushed back home, decided to lay down but became very anxious; I got up from the bed and while walking toward our family room I began feeling very dizzy, weak and nauseas. I asked my wife to call 911 to rush me back to Mayo. After spending a few hours at Mayo; submitted to a CAT scan, blood work and neurological evaluations, I was cleared of any issues with the coiling and was discharged with orders to rest. I followed their instructions but after a few days I was still feeling the same. I went to see my Family Practitioner where I was prescribed Valium to counteract what they thought was Vertigo. I was also given orders to see an ENT and Audiologist for further analysis on Vertigo. The ENT reviewed my initial MRI and determined I had chronic allergies and sinusitis. I went to see the Audiologist and was diagnosed with vertigo in my left inner ear, culprit of my dizzy spells. An Epley maneuver was conducted on me to alleviate the vertigo and seemed to work very well. To make matters worse, the femoral artery groin area where the catheter was inserted was very tender, I was limping all the time feeling tingles and numbness down my leg to my toes. My dizzy and numbness symptoms worsen with intense pain in the groin femoral area. With the fear that something was now wrong with the leg area, I went back to the Mayo ER where an ultrasound of the femoral artery was conducted and once again.I was cleared of any blockages, clots or infection. I thought I was going crazy.
Three months later, I'm still battling sinus infections, mild vertigo and slight pain in my groin femoral artery area, but definitely feeling much better. However; I've become more paranoid constantly checking my peripheral vision, checking the strength of my arms and legs each time I feel dizziness, tingling and or numbness symptoms around my extremities. I guess this is part of the healing process. R.I.P. my angel, Sofia! Mami, Daddy and your little sister love you dearly.
Parents, please check your family history and if any of your first line relatives, siblings or parents has experienced this horrible illness, please do not hesitate to consult with your family Practitioner or Neurologist. If you reside in the Jacksonville, FL area, the Mayo Clinic has an excellent Neuro-Interventionist team that can also answer all your questions and or guide you in the right direction.
Update: 22 August 2010
Family and I have survived our first year without or daughter, Sofia. The last 12-months have been very hard, but with GOD, our 5-year old daughter, family and community by our side, we have managed to wake-up every morning and make the best of life. In regards to my Aneurysm coiling; I've had a slue of medical symptoms post surgery: Migraines, Vertigo, high blood pressure, elevated Thyroid with a 4mm nodule (need more testing to make sure it is benign) and asthma. Otherwise; according to my interventionist, my aneurysm coiling still looks intact and looking forward to my angiogram follow-up in December.
Update: 17 December 2010
A book called "Patent Leather Shoes" with our little, Emma, as the main character was recently released. 10% of the proceeds will go to the "Sofia Alejandra Gutierrez Brain Aneurysm Research Fund" which allows the dedicated staff at The University of Texas Health Science Center at Houston, to accelerate their research into the genetic causes of the disease and discover new therapies and treatments to prevent premature deaths. If you are interested in purchasing the book, your gift will help fund a national effort in raising awareness that children are at risk as well as adults. You can purchase the book at Patent Leather Shoes
P.S. The University of Texas Health Science Center @ Houston with support/funding by the John Ritter Foundation have already discovered specific genes causing aortic aneurysms. We seek the same results to prevent cerebral ruptures...ultimately saving lives!
Update: 21 December 2010
One more thing I forgot to mention in my update. In regards to my health; I recently had my 18-month check-up and my coiling still looks like a perfect little bird's nest :-) Thank-God! In the last few months I've also discovered I've had high blood pressure and Asthma---main culprit of my dizziness! I guess when the hospital intubated me for the coiling procedure, I was allergic to the material used (I'm guessing latex). Hence; aggravating my asthma symptoms causing dizziness due to lack of oxygen intake. I'm now under the proper medication to control my asthma and high blood pressure with minimal to none dizzy spells. Thanks for listening - have a great and blessed holiday season family!!!!
Update: 27 September 2011
Ispan>have some exciting news to share with the family. Let me start with myself; I'm doing pretty good - no more migraines and managing my vertigo with sick motion medication - symptoms I developed after my coiling - oh well...I guess our brain tends to freak-out a little when invaded :-). I have my 2-year angiogram this Friday - not looking forward to the small incision on my leg - ouch! I know...I'm a wimp! Other than that; my wife is now in her second trimester - God has definitely blessed us again! Now for the more important news; my wife has been working very hard putting together a fund raiser event in memory of our daughter to raise brain aneurysm awareness. The event is taking place on 11-11-11 in our town of Jacksonville, FL. We will have auction items autographed by, Brett Michaels, John Ritter (John's widow, Amy Yasbeck, will be donating some of John's items during "Three's Company"); Raffle items from local vendors, Live Entertainment and much more...All funds will go directly to the Sofia Gutierrez Research Program
The site is currently under construction with emphasis on intracranial aneurysms) being managed by the University of Texas Medical School or UT Health. We are working with UT Health in Conjunction with The John Ritter Research Program in Aortic and Vascular Diseases to discover the genetic causes of aortic and other vascular diseases including brain or intracranial aneurysms. The John Ritter Research Program aims to find genetic markers that cause vascular diseases including brain aneurysms and potentially use these markers to identify those who are at increased risk as well as understand the mechanisms leading to disease in order to improve medical treatment and management. If anyone is interested in the event, our cause or would like to donate to the fund, feel free to email me so I can send you the appropriate forms, etc... I will keep you posted on the website completion - should look similar to John Ritter Research Program.
Again, thank-you for all your support and God Bless!
Update: 9 November 2011
I thought I'd send you an update and final copy of our event flyer scheduled for this Friday (Veterans's Day). Feel free to forward it to the family in hopes that anyone near the Jacksonville, FL area can attend. Also, www.SofiaGutierrezResearchProgram.org should be up and running either this Wednesday night or Thursday morning.
© Copyright 2009 Omar Gutierrez
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