From the moment Sadie appeared on a positive pregnancy test, I knew that she was an answer to prayers. And yet, she arrived months after I had actually stopped praying and trying for a baby. It isn't that I had 'given up' really. But something in me had just sealed off the possibility. Then one night in June, Mark and I were at the Christening for a good friend's second child and when we were walking back through a golf course to where our car was parked, Mark was very contemplative about it all. So we stood there and had this matter-a-fact discussion where he articulated that he wasn't ready to give up hope entirely. I felt like I had been socked in the stomach (you readers can admit it... you were thinking that the walk back was going to lead to some hanky panky in a sand dune or something... :) ). I told him "I can't pray anymore Mark - it just wasn't working." But somehow in this conversation (I admit I had a few glasses of wine at this Christening reception), I agreed to being open to a baby. And two weeks later, with no planning or intervention, Sadie was conceived.
I think there are times when the best thing is to pray for a specific outcome. Sometimes, it does work! For example, my friend Janet's son prayed for a trip to Disneyworld and the very next day, he won a trip to Disneyworld for their family of 4! The night after my secretary called me and told me that I just needed to pray to God for a new nanny and he would answer me, we got an email from a friend who told us about Tyler who is our current nanny. She is the human embodiment of an answer to our prayers. And so, my inclination is to pray for the solution that I want. Except... what to do when you don't know what you want?
I have learned recently that those are times when the best thing is to pray is that your heart open.
And this is the prayer that I believe has finally been answered with Sadie's birthmark.
Here is my girl just a few hours old. You can barely see it now but the nurse who held her first and handed her to me saw it right away, a little red dot and a halo around it on her left cheek "This is probably a hemangioma, which is a strawberry birthmark" she told us.
In the picture with the white sweater on the left is Sadie when she was just about six weeks old - it was one of her first real smiles and I was diligent about catching it on camera. The birthmark that was just a spot at birth had grown to be heart shaped. The pediatrician told us to watch and wait it out as it would disappear in a few years. But Mark was traveling to Houston a lot during my maternity leave and I just dove into an obsession about this thing. I would spend hours and hours searching the Internet for more information, and got very scared. Some hemangiomas can grow to be very large and very disfiguring and I wanted an answer on Sadie's right then.
Our pediatrician agreed to refer us to a pediatric dermatologist in Richmond and I called her that moment, when she was six weeks old, and was told that she was booked out for a month. Time was critical I told her, the hemangioma was growing every week.
They squeezed me in when she was eight weeks old and Sadie had her first laser treatment on her birthmark. I will never forget when the dermatologist said "I wish we had seen her earlier because we could have lasered it before it really grew." My mother guilt for not pushing harder! Sadie tolerated three laser treatments very well. The surface birthmark stopped growing and started the very slow process of "involution" which basically means fading and shrinking. They key word for us, though, was slow.
And then there is the picture in the Hawaiian outfit on the right (sent from Hawaii and Aunt Carolyn) - she was six months old. The bump underneath (called a subcutaneous hemangioma) was evident and while an ultrasound revealed it was not pressing her eye orbit, there was nothing more that we could do other than find a surgeon who would operate on it. There are some of those surgeons in New York who would do this, though it was a purely cosmetic surgery. Mark and I thought about it, prayed about it, but just couldn't accept the multitude of risks that such a surgery presented. So we decided to wait and watch it.
Every few weeks, then months, and then barely once a year it seems... I would spend several hours diving into more Internet research. I would revisit our decision to wait and wonder if we shouldn't be more aggressive. We saw our dermatologist every six months who would photograph it and tell us how it had changed, and tell us that eventually it will be the right time to do surgery. And when Sadie was about two and a half, an experimental treatment drug evolved called Propranolol, which was a beta blocker. Babies who were part of the first trials were admitted to ICU to administer the drug and monitor its affect on blood pressure. But Sadie was too old for it -- the drug only helps to stop a growing hemangioma from... growing. Sadie's had already stopped growing and the beta blocker would have no effect on shrinking her surface or subcutaneous birthmark. I felt like we had missed a critical boat.
But our lovely girl was continuing to grow and her personality was not fearful, or embarrassed, or self critical. The more chocolate in a picture, the better! And the gift of a best friend, with an identical birthmark and similarly not-shy personality, sealed the deal. These were not unhappy days. They were not stress filled or days of second guessing. These were days of joy.
How long could we be guaranteed to live in our bubble, though, I sometimes wondered. Every medical professional that we would see from about the age of three on, from regular pediatricians to ENTs to surgeons to dermatologists, all agreed that the birthmark should be removed before kindergarten starts. The beta blocker had changed the landscape for birthmarks... they were now being treated more and more right after birth. The old statistic that about 10% of kids would have a hemangioma, and this was more common in girls born early of older mothers (our three elements), was changing. All of the sudden, these same doctors that told us to be patient were now saying "You are going to look at having it removed, right?"
I couldn't count on my hands and feet the number of times they would say "Kids can be cruel." and that was that. And while I resisted this advice, part of me was ready too. I hated hearing the comments... and those were just the ones that I was around to hear! One set of grandparents would say "don't do anything and watch it fade beta blocker " and I would resent that because they hadn't read the Internet research that indicated that it wouldn't fade or shirk any further. And then the other set of grandparents would say "you should look into the surgery" and I would resent that too because they hadn't read the Internet research indicated the risk of bleeding and tough scar placement. I got back to researching it to death and got frustrated when Mark didn't want to read all the links I would send him and didn't want to talk about what to do all hours of the night. And when he did voice an opinion, I would resent that too "You aren't with her enough to hear all the comments, I am!" I would say back at him. Part of me was ready, and part of me was 180 degrees from ready. No one had the right answer for me and I was frustrated.
I didn't know what to pray for.
So we went to see a surgeon a few weeks ago. And he was the opposite of wishy-washy and told us, in front of Sadie, that we needed to operate and here is how he would handle it. The visit was less than 12 minutes and I walked out shell-shocked. I would have been fine with this guy operating on me -- it is kind of like picking out kitchen appliances, I am perfectly fine with letting someone else make tough decisions and me not getting involved in too many details. But this was Sadie. And I was not feeling right about this.
Again, what do I pray for? Clarity. A few people told me that - and it was eye opening. "I pray that it becomes clear what to do." What?? Really??
So I took their advice. And I stopped praying that I would have the strength to schedule the surgery. And I stopped praying that I would have the strength to resist societal pressures to have the surgery. I sent a last email to a wonderful vascular birthmark foundation that I had communicated with over the years to ask if they had any advice on questions to ask surgeons about their techniques. And I wept when she wrote back and sent along information along with saying this "I want to applaud you on how you have raised your daughter." It was a reminder that what we did for the last four and a half years was right for us and shouldn't be revisited. Sure I could have found a surgeon to take it off when she was a baby and we wouldn't be going through this ordeal now. But somewhere in that birthmark was a lesson for mother and daughter and I am glad that I was learning it.
We did the right thing. For more than four and a half years, we have done the right thing. And if we are open to it, we will do the right thing again. I started to pray for clarity. I stopped praying that I would make the right choice. I prayed that the right choice would just appear.
We went to see a new surgeon on last Friday afternoon. I had scheduled the appointment a few months ago, at the same time that I scheduled the appointment with the surgeon that we saw a few weeks ago. Both of these surgeons had been recommended by our pediatric dermatologist two years ago. None of my earlier paperwork made it to this appointment, and we had to wait almost an hour to be seen. It wasn't starting off too well.
But... it was remarkable. The moment we walked into the consultation room (3 couches facing each other, and a million toys on the fourth side for Sadie to play with), we knew she was the right person. Her whole explanation of what she wanted to do and how the anesthetic would work was understandable. Every question I asked her was responded to with "That's a great question" followed by her explanation. She is a few years younger than me and I can honestly say, I have never trusted someone more. She has a different way of approaching the birthmark and will focus on removing portions of the bump underneath more than the surface mark, allowing the surface mark some more time to fade and possibly respond to more laser treatments. The bump underneath is now a fatty mass and needs to be removed, but she will make a much smaller incision which will leave a smaller scar. No external stitches -- yay for derma-glue-- and the internal ones will dissolve. She predicts surgery of under an hour. And the technique for the anesthetic will affect short term memory "so your child will never remember that you weren't there the whole time". Their most important goal is that the child doesn't have negative associations with surgery. While she can't make promises because she hasn't seen what is under the skin, she is not worried about the size of the mass underneath or about blood loss. You can tell that she isn't flip or pomous... she has done these surgeries before and is happy to share her experience.
Mark and I walked out on the same page with huge smiles on our faces. Our nanny Tyler (who had been with the other surgeon's appointment too) looked at us with the same expression "Wow!" As I drove Sadie home, Sadie said "I want to do that surgery." And I said "That's great, you mean -- are you saying that you want to have the surgery?" And she was quiet for a minute and then said "That's not what I said Mommy, I said I want to do the surgery... I want to be that kind of doctor and do that kind of surgery." Ahh, my special child.
It is amazing- once I stopped fretting about the choice to make, it became clear for the right thing to do.
We will ask for your prayers on the date for the operation. And if you ever have a friend or relative that has a child born with a hemangioma birthmark, have them contact me.
