Hailey Margarita was born on May 10th, 2007. I had to be induced as she was late 10 days. She weighed 9 lbs and 5 ounces.

Right at the time she was born doctors were able to hear a heart murmur. She also would show periods when she would start breathing really fast for about 1 to 2 minutes. Her face had no signs of the hemangiomas yet; she just showed some discoloration on the left cheek, and her lower lip had a small purple bruise. And she also had jaundice.

She spent five days in the NICU before she was able to come home.

When she did come home, we started to see how these tiny little dots were appearing on the left cheek and on her lower lip and onto her chin. We thought this was just a rash that would soon disappear on its own. However, ever next day would show more areas of her face having these red tiny dots: they started to show up on her neck, ears, and the back of her head.

Hailey visited her regular pediatrician at 1 week of age, and when we asked about the redness on her face the doctor just said we needed to watch it for a few days.

We were back in the pediatrician’s office at 2 weeks of age, and by this time, the spots on Hailey’s face were getting redder and redder, and they kept overtaking new areas of the neck and back of the head.By this time she had also developed a very small ulcer on the left side of her lower lip, and this is when the pediatrician told us we had to go to a pediatric dermatologist.

Hailey’s pediatrician had very little information to provide to us about Hailey’s “red spots” all over her cheek, chin, ears, neck and back of the head. She called in another pediatrician in the office, and when he observed Hailey’s face, he just said he had another patient who had a hemangioma and that she had been treated with steroids successfully. Neither of the two pediatricians could say for certain what Hailey had on her face. They said that it could be a Port Wine Stain, or a Strawberry mark, or it could be a hemangioma as well.

This is the first time I had heard the word “hemangioma” in my life. Even before I was able to go home and start researching what condition was, this word just sounded scary from the get-go. I immediately started looking for all these different terms on the web, and the thing that tipped me off about the possibility that Hailey might have a hemangioma on her face was the fact that a hemangioma on the lip would ulcerate starting out as some sort of bump. Hailey had already developed a very small bump on the left side of her lower lip, and that is where a tiny ulcer had showed up as well. It looked like a cold sore to me, but when I started to read on the Internet about the ulcers that are caused by hemangiomas, then I knew that Hailey was going to be diagnosed with a hemangioma birth mark.

The pediatric dermatologist visit happened at about 1 month and 1 week of age, and on that first visit, Hailey was diagnosed with PHACES Association. The dermatologist detailed out all that a PHACES Association diagnosis implied: how Hailey needed to be seen by all these different specialist and that she could be facing heart and brain malformation problems. The dermatologist referred us to the cardiologist, ophthalmologist, ear and throat specialist, and she gave us an order for an MRI as well.

The dermatologist explained that the treatment for Hailey’s hemangioma would be to use an oral steroid called PREDNISOLONE. Hailey’s hemangiomas were determined to be a combination of a superficial segmental and subcutaneous hemangiomas. Hailey was started on a very high dose of the oral Prednisolone (9ml per day), but after one week her dose was lowered to 5 ml / day. Hailey’s dermatologist also prescribed Regranex Gel to treat the ulcer on the lip.

We were really scared as we were listening to all these things, but since I had been reading about PHACES, this helped me tremendously, as I had already considered the possibility that Hailey might also be diagnosed with this. It was at this point that I started to worry a lot less about Hailey’s face and started to panic about what the results of the MRI test and the visit to the cardiologist would reveal.

We scheduled the cardiologist and MRI appointments right away, at the Children’s Hospital of Wisconsin (CHW). In the cardiologist office, Hailey had a cardiogram and an ultrasound of her heart. A very small Ventricular Septal Defect (VSD) in her heart was found with the ultrasound, but the cardiologist reassured us how this was not dangerous at all. He indicated that a VSD is a very common heart defect and that it is a tiny hole on the wall of the heart which should close up on its own at around 6 months of age. He also said that this type of heart defect does not cause any problems whatsoever.

The MRI was also done at CHW on the same day we went to the cardiologist. So, right after the cardiologist appointment, we headed off to do the MRI test. The MRI was going to be something difficult to do given that Hailey was only 1 month and a half old. She could not be given a sedative to keep her still while inside the machine because she was too young, and because she had heart problems to begin with. We had to keep her awake for a few hours without feeding her, so that she would get really hungry and tired, and that she would fall sound asleep during the MRI. She almost did not make it as she kept moving and crying from the loud sound of the magnet that is used to do run the MRI, but a pacifier did the trick and she got through the 1 and ½ hour long test.

We could not have been more thrilled with the results we got from the cardiologist, as we trusted that the VSD found in Hailey’s heart was going to close up by six months.

The MRI results came back with great results as well. Everything looked normal in her brain, eyes, and throat. There were no other internal hemangiomas anywhere in her head. We could not have been more ecstatic!

We were very amazed at how well Hailey responded to the steroids treatment she was receiving. Her hemangiomas started to look less red than usual as soon as she started taking the high dose of prednisolone. Once her dosage was reduced, she still did well in that her hemangiomas did not seem to change much from one day to the next.

We made sure we applied plenty of Vaseline especially right before feedings. Hailey did not have problems feeding even during the time when her lower lip ulcer was at its worst. She did cry a lot throughout the day up to the time when she turned 3 months, probably because the lip ulcer hurt a lot.

The other thing we had to manage for Hailey was her acid reflux caused by taking the Prednisolone. The dermatologist first prescribed Zantac for it, but it did not work very well for Hailey. Then she was switched to Omeprazole and that medicine completely stopped her from crying after feedings due to an upset stomach. This is when Hailey first started to have really normal days where she was happy most of the day and she was able to sleep through the night. It was an amazing change as we started to see her true personality: a very calm and happy baby who loved to be held, loved staring at toys placed in her crib,and most of all, loved to smile a lot.

During this time we visited the dermatologist every 3 weeks and continued seeing the regular pediatrician. Hailey was able to start all her immunizations except those that had live viruses (like the Rotavirus vaccine).

Hailey also visited an eye doctor when she was 2 months old had a follow up visit at 6 months. The eye doctor looked at the MRI results to make sure there were no underlying hemangiomas in the eyes area, and looked at how well Hailey could focus on objects. The doctor had found no issues with Hailey’s eyesight that would be evident at this time.

We never had to go to an ear and throat doctor with Hailey as the MRI had shown that there were no underlying hemangiomas in the throat.

At six months of age, Hailey was doing excellent. Her regular pediatrician could not hear her heart murmur any more. Hailey’s hemangiomas were pretty stable and not doing much, and her development was right on track as far as we could see. She ate normally, slept through the night, was very interested in things going on around her when she was awake, and was in my view “the happiest baby I ever saw”.

We were anxious to go see the cardiologist at 6 months, and we were very HAPPY to see that the ultrasound she had in her appointment with the cardiologist showed that her VSD had closed up. The cardiologist was no longer able to hear the heart murmur as expected, and he even said there was no need to have any follow up with him. My husband Jeff, however, insisted that he wanted Hailey to be checked again in the future, so we will be going back to see this cardiologist when Hailey turns 2 and ½.

Hailey had an MRI done at this point, to make sure that there were no undiscovered hemangiomas ... or that no new ones had developed from the time when she had her first MRI done, at 1 and a half months old.

The results were great once again. She did have an A1 Segment vein missing from the veins that go up to the brain (not sure I am explaining this accurately), but the bottom line with this is that it has no impact to Hailey’s development or any other brain functions for that matter.

We have also started to decrease the dose of prednisolone now as the hemangioma seems to be now in the involution phase. Her left cheek is still bigger than that right cheek, but it does seem that is going down in size, so that is a clear sign that the internal hemangiomas on that side of her face are going away.

Hailey is going to be 1 year old in a few weeks, and she is doing wonderful at this point. She is the happiest baby anyone ever saw: she loves to sing in her own language, play with her older sister Ashley who just turned 3 years old, and giggle and laugh hysterically – and – most of all, she loves to dance.

Developmentally, she is doing very well: she is the fastest crawler I ever saw, and she can cruise holding on to things very well. She actually gave her first steps yesterday, so I am almost sure she is going to walk maybe by the time she turns 1 year old. She plays with all her toys and has a lot of fun, she babbles a large amount of sounds and she is calm and energetic both at the same time.

Hailey has been a blessing for our family. She has taught us so much about love and strength and patience in a short 1 year and we can’t wait to see what else she is going to do next!