My story begins in March 2005 when my daughter Madison was born. I had a very good pregnancy, no problems at all. Madison was born on time and was delivered vaginally, with absolutely no problems. Everything at birth was perfect, Madison was perfect!
Two (2) days later, a small mark appeared on Madisons left arm, just above the wrist. At first, it looked like a bruise but within a day, it began to turn red and began to spread. My first thought was that it was some kind of delayed birthmark.
By the time Madison turned 2 weeks old, the red mark on her left arm had spread to cover her entire arm, hand, fingers, left side of chest, left side of back, up her neck and up the left side of her head. We took her to the doctor and that’s when we were told that it was a vascular birth defect called a hemangioma.
This is what it looked like at 2 weeks of age.
We were immediately referred to a pediatric dermatologist and began doing a lot of research on hemangiomas. I was told that this was quite an extensive hemangioma, that most are only about the size of a quarter…..Madisons covered a quarter of her body. I was also told that they wouldn’t have to do anything for this because most hemangiomas typically go away within the first 12 months. Little did we know, Madisons hemangioma was anything but “typical.”
At just under 3 weeks old, Madison began having trouble breathing. It actually sounded like congestion, like she just needed to cough. But within hours, Madison was gasping for air. We rushed her to Texas Childrens Hospital and within a few hours, she was in the operating room having a bronchoscopy (scope down her airway). The results showed that the hemangioma was growing inside her airway and that it was 90% blocked. They said it was like an adult trying to breathe through a coffee straw. They used a laser to remove a large portion of the hemangioma and open up the airway. Madison remained in the hospital for several days. When she was discharged, she had to begin taking large doses of steroids daily to slow the growth of the hemangioma. This was just the beginning of her journey.
Madison returned to the hospital approximately every 28 days for another laser surgery on her airway. They did a full body scan to see if the hemangioma was anywhere else inside of her body, the results showed a small spot on her heart, liver, kidneys, brain and spine. We were told that they wouldn’t do anything for these spots, since they were small they would probably just go away on their own. Unfortunately, again, Madison was not the “typical” case. The hemangioma in her spine began to grow rapidly. It was growing around the spine and through the vertebrae. The doctors were worried that if it continued to grow, it would cause paralysis from the waist down. They immediately put her back in the operating room and inserted a broviac line into her chest.
Madison then went through 6 months of chemotherapy to try to slow the growth of the hemangioma in the spine. The external hemangioma continued to grow and darken. For the next 2-1/2 years, Madison had surgery on her airway once every month. To date, Madison has had over 30 surgeries on her airway.
When the hemangioma first appeared in the airway, Madison stopped eating. She was admitted to the hospital several times for “Failure To Thrive”. We eventually had to have a feeding tube placed in her tummy. Madison was tube fed for the first 2-1/2 years.
At almost 7 months old, Madison spent 32 days in ICU….23 of those days she spent on life support. Madison was extremely sick with Pneumococcal pneumonia, which usually only attacks young children or the elderly who have very low immune systems. Since Madison was still on high doses of steroids and chemotherapy, her immune system was very low. Also, the steroids caused Madison to swell up, her face was extremely fat from the steroids.
After 23 days on life support, I was finally able to hold her again.
When she left the hospital, she went home on oxygen and remained on it 24 hours a day, 7 days a week, for 6 months.
Over the next 2 years, Madison was in and out of the hospital, surgery after surgery. The growth period of her hemangioma lasted longer than the 12 months we were originally told because of the steroids. Surprisingly, the steroids actually prolonged the hemangiomas growth period.
Today, Madison is a very happy, very healthy 3-1/2 year old. We are finally “out of the woods” with her airway, haven’t had to have a surgery in 11 months now. The hemangioma in her spine has stopped growing as well. As for the external hemangioma, it is finally fading away, some parts of it are not visible at all, while other parts can still be seen. There are small spots still on her chest, arm and the palm of her hand.
Madison is truly “My Miracle Baby”