My Marfan Story
Heads up to anyone reading this...its a long story. Hi my name is Tiffany Wolfe I am a 26 year old Mother of one beautiful (adopted) daughter and I have Marfan syndrome. I am what the doctors call a spontaneous case.There is no family history, no one in my family has Marfan syndrome but I just happened to be born with it. When I was two years old my parents began to worry, I was the size of a average 4 year old (tall) I walked on my ankles (severely flat footed) and I would walk into furniture and was very clumsy ( legally blind). my parents sought out help for my vision problems, luckily the optometrist who had seen me immediately recognised some of the symptoms I was presenting and thought that I may have Marfan Syndrome. I was referred to a geneticist who agreed and I was diagnosed with Marfan Syndrome (although there were no genetic tests for Marfan at this time). I began seeing a cardiologist soon after my diagnosis. My parents struggled to take care of all my needs, it was a real struggle to get me into leg braces (but they managed and I wore them day and night). My younger years I had it pretty easy medically but with my tall stature, my thin glasses and my buck teeth (due to my cleft palate) I was teased relentlessly by my peers. when I was 7 years old I awoke in the night with severe eye pain my parents took me into the hospital and they found that my lenses had dislocated. The decision was made that the lenses would be removed. due to the weakness of my tissue the doctors decided that they would not be replacing my lenses, instead I would wear contact lenses. Thankfully contact lenses worked for me I had near 20/20 vision in my eyes. at the age of 8 I got braces (THANK GOD!) I could not even close my mouth because my teeth were pushed so far forward. I continued to do well for a few years but at the age of 11 my cardiologist discovered that my aortic valve was needing a repair he referred me to the hospital for sick children in Toronto Canada where I had my surgery. The surgeon had decided that instead of doing valve replacement he would "simply" repair the valve. 6 months later I had to go back under the knife because the valve sparing procedure didn't work. The next surgery was done and a mechanical valve was successfully put in. 4 months later I began presenting symptoms of a cold/ flu this lasted nearly a month and began to worsen. I was in renal failure and I was rushed into the children's hospital via air ambulance and had immediately undergone emergency heart surgery. The surgeon decided to do a bentol procedure ( a mechanical valve and a section of the aorta). 3rd times a charm! The surgery worked I recovered from the blows of having 3 open heart surgery inside of a year and went on with my life. the trauma done to my body hadn't gone unnoticed by my peers. I had scars and as a result of having my heart 4x its normal size. my breast bone was extreamly narly it was bumpy and jagged (protrusion of the sternum made worse by the surgery)...I hide during my teen years behind sweaters. At the age of 16 I got breast implants to help hide my ugly sternum..this just made it look like I had 3 breasts. At 17 years old I had my first lung collapse ( Pneumothorax) it was repaired by inserting a chest tube and a few nights in hospital. through my teen years and early twenties I sought out a surgeon who would dare fix my breast bone (given all the scar tissue) ...after 7 years of searching I found a surgeon who would do it, with the stipulation...a Heart surgeon needed to be present during the operation. after years of torment and thousands of days spent covered by baggy sweaters I finally had a surgery date (I was 21 years old). they literally broke my entire chest plate into 6 pieces and turned it inside out...and it was worth it..the biggest sigh of relief...I wore tank tops all summer long. I had a 2nd pheumothorax the summer following my breast bone surgery (22 years old), one lung had fully collapsed and the other was half collapsed they had to operate and fix the tear in order to re inflate my lungs. At 23 I was told that I could no longer wear contact lenses (they were suffering my eyes). I underwent a lens replacement (intraoccular lens implants) that year I was married to my boyfriend of 6 years, happy to begin our lives together the idea of children was on our minds. The decision to adopt wasn't easy, I think every woman longs to see what their biological child looks like..especially because it is a mix of yourself and the person you love most...I explored many different avenues, I knew that pregnancy would weaken my tissue and could cause more damage, I looked into surrogacy, but at the end of the day I could not knowingly pass on Marfan Syndrome to my child..I was a sick child..I seen my parents break down several times and I didn't want the heartache of "dealing" with a sick child...My sister offered to donate one of her eggs..I love my sister but I couldn't risk putting her in that position.. or the pain of loosing her first child to me...my husband and I had decided to try the adoption route we placed our names on the list and were picked within 1 month of applying our daughter was born on January 24 2011 and we brought her home on January 26th 2011. Our adoption journey was amazing, and we are totally in love with our daughter...and ironically she looks just like me (minus the height). On Dec 22 ,2011 I had severe pain in my back and chest (like a ripping) I was rushed to the hospital and it was found that I had a type b aortic dissection...the doctors tried to manage the dissection with blood pressure medication. On Dec 23 they found that the tissue had weakened and I had an aneurysm that was about to burst the emergency surgery took place on midnight of December 24th. The surgeon replaced the section from the top of my aortic arch to my diaphragm. I recovered fairly rapidly and was home from the hospital by new years where we celebrated the holidays with our families. on April 16 2012 I was admitted to hospital from back and chest pain. A c.t scan found that another aneurysm has been growing right at the point where the prosthetic aorta and the natural tissue meet...I will be having another surgery within the next few weeks to replace my aorta (from my diaphragm to my groin). this same c.t scan also uncovered a bulge (aneurysm) at the point of my aortic valve and the natural tissue (opposite side of the arch) this will also need to be repaired in the up coming months. Well like I warned you I had a long story, but I needed to share my story with others, not to scare them but to enlighten them..I also hope to find and communicate with other Marfan's people. thanks for reading
** update Oct 29 2013 ** My aorta surgery was successfully completed. The aorta is prosthetic ( Dacron) from my arch to my femoral arteries. My vocal cord surgery was also successfully completed and I sound similar to how I sounded prior to it being paralyzed.. For more information regarding Marfan syndrome or if you have questions for me. please email me at firstname.lastname@example.org.