The Little Heart That Heals Me

The Little Heart That Heals Me organization is open to any mom that has faced a challenging time in their life weather it be a heath concern, financial worries or other type of hardship and would like to connect with others thay may be able to relate for support and encouagment.......................................................................... ........................................................................................................................................................................................ My name is Tracy Lathrop, I am a 31yo nurse who is now a stay at home mom to my beautiful little 5mo daughter Madisyn Ann. Madisyn's journey into this world was not at all typical. I was born with L-Transposition of the Great Arteries. L-TGA is also called congenitally corrected TGA. It is a rare form of TGA where the arteries are in the correct position but the ventricles are reversed so the smaller ventricle becomes your systemic ventricle and is supplying blood to the entire body instead of just to the lungs which over time causes it to enlarge and weaken. I was also born with a large VSD and a prolapsed mitral valve. I had my first repair at 2weeks old and some major repair including a mechanical mitral valve implant at age 3. There were many complications and I subsequently developed complete heart block and needed a pacemaker. I spent close to a year of my life in the hospital and was on life support for quite some time. At that time the surgeons told my mother I would never make it home from the hospital and if by some miracle I did, I would not live past the age of 10. I can honestly tell you that without my mother's love, faith and support I would not be here today to share my story with you. My last open heart surgery was in 1994 for a valve replacement. Other than pacemaker implants and anticoagulation issues I remained pretty healthy until 2005 when I went for a physical prior to nursing school. I had a fever at the time so my pcp ran some blood cultures which grew out a bacterial infection and turned into enocarditis. The doctors told me that it most likely it came from a small cut on my finger (I was a florist at the time). I had just thought I had a cold and this too took away yet another year of my life. However I was very was determined to finish nursing school and I did so with a pic line in my arm, LOL! After that I began having some arrhythmias but have remained relatively healthy other than SOB with stairs, jogging, strenuous activity... In November of 2006 I started my first job as a pediatric nurse in a small office working with some really great people. When we weren't giving advice to parents or tending to a sick child we were laughing. My life was finally moving in the right direction. January 26th of 2007 I married the love of my life Joshua and we were very eager to start a family. I switched my care from my regular cardiologist to the Boston Adult Congenital Heart team at Children’s Hospital in Boston (MA) I had my first EP study which was one of the worst and scariest experiences of my life. In the end I was very relieved when they were not able to induce an arrhythmia and thankful it was behind me. I had multiple stress tests, echo's and CT angiograms and was seen by several high risk OB's. Unfortunately the tests revealed that my right systemic ventricle was quite dilated and my ejection fraction was only around 30-35%. Because of this and the risk of clotting my mechanical valve my Cardiologist advised me against pregnancy unless I could get my EF above 40%. They said I may not make it through a pregnancy and if I did I may end up in heart failure and may not be able to care for my baby. This was heartbreaking. I was completely devastated but determined to get in better shape. So I bought a treadmill and I walked...and walked...and walked. My sister offered many times to be a gestational surrogate for us but I did not consider it until about a year later after failing my 7th stress test. Unfortunately I had some complications with the IVF for our surrogacy.After the egg retrieval I had a post op hemorrhage and went into renal failure and was in critical care in the ICU for 7 days and spent another 2.5 weeks in the hospital in mild congestive heart failure. This was a glimpse to me of what a toll pregnancy could have taken on me. All water under the bridge now. Madisyn Ann Lathrop was born on August 11th 2009. She was 5lbs/15oz and 18 3/4inches long. This was truly the best day of my life and felt very surreal. Before Madisyn was born I often found myself mourning my life, just waiting for the next bad thing to happen. From the first time I held Madisyn in my arms I have felt a sence of peace, like nothing else in the world mattered like I was now part of something much bigger than myself. Madisyn was also born with a VSD; thankfully hers is much smaller than mine. She does not have any complications from it and we are hopeful it will close on its own. Every night when I lay her to sleep I tell her how much I love her, how long I waited for her and that mommy will always be with her. Every morning I awake and see that little face I know that there is hope. Today I am extremely grateful for my sister’s persistence and for taking her up on her offer. I feel very blessed to have my wonderful little family and such an amazing selfless sister. I still have arrhythmias but they are tolerable most days, I absolutely LOVE, LOVE, LOVE being a momma and I think it is a very big distraction from all the "what if's" out there.

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Struggling to Cope

Im reaching out to other parents out there.........My boyfriend of whom I have been with for almost 5 years has a son who is now 6 with Hypo Plastic Left Heart. We all love him...