Monday, November 6, 2006

From the Social Worker

Dear Family and Friends of Tom, Christy, Murphy, and Harlie, None of you know me, but I am the social worker who has been working closely with Christy, Tom, and Harlie at Children’s National Medical Center. It has been a privilege getting to know Christy and Tom, and also to journey with them as they welcomed precious little Harlie into the world. Tom and Christy have shown me that they are loving, caring, devoted, assertive, and wonderful parents. And I have no doubt that Harlie has the best possible parents to be by her side throughout her life’s journey. How fortunate Harlie is to have been born into the family that she was. As you all know, Harlie was born with numerous medical complications. She was born with a series of congenital anomalies (that’s medical speak for things that turned out a little bit different for Harlie) which are part of a syndrome called Goldenhar Syndrome. The doctors are hopeful that all of Harlie’s complications can be repaired. (If you would like to check out a website with some good information you can go to: http://www.goldenharsyndrome.org) Both Christy and Tom encourage you to ask questions if there is something you do not understand or would like to learn more about.Because of Harlie’s syndrome, she has undergone numerous surgeries. She underwent open-heart surgery a few days after birth in order to begin to repair her congenital heart defect (this will require several surgeries during the next year or so). She also had a tracheostomy and a g-tube placed. Harlie needs the “trach” because she has an underdeveloped jaw, which makes her airway small, and unstable. The trach ensures that Harlie will be able to breathe. You will notice that the trach means she has a hole in her throat – below the vocal chords. This means that no air passes through the vocal chords, thus she cannot make sounds like a normal baby. So, when Harlie cries, the noise sounds a little funny. This is normal and you will get used to it. Harlie was given the G-tube, because the doctors expect that feeding will be somewhat of a challenge for Harlie because of her small airway and chin. The g-tube ensures that Harlie will get all the nutrition that she will need, since she may not be able to take a bottle for a while. Over time however, as Harlie gets bigger, she will eventually not need either the trach or the g-tube. Harlie’s most recent surgery was to remove 3 “skin tags” (which are little pieces of extra skin that sometimes form on people, for reasons which doctors don’t understand…these are actually quite common) from her face. These were removed quite successfully.Harlie will be having many doctors’ appointments for the next many years of her life. She will also have a few surgeries in the coming years to help her jaw form correctly, to repair her eye (she has a cleft in her eyelid, and the opening is larger than mine and yours – it also appears that she lacks the muscle tone around her left eye which leaves her unable to blink or shut her eye), and her left ear which is a little wrinkled and misplaced. She will have further tests done on her left ear to see if she has an ear drum (there is no opening to that ear to look inside and the doctors are unsure whether she will have hearing capability in that ear). The journey with Harlie will no doubt be a challenging and busy one, but it will also be filled with lots of joy and love. I want all of you to prepare yourselves to meet a beautiful little girl. Harlie certainly has a few unique features about her that make her look a little different. But she is adorable! She has perfect little hands (with looooong beautiful fingers) and feet, and her big brother’s same gorgeous blue eyes. She is long and skinny and has the same cute little knees that Murphy had, that make Christy laugh every time she looks at them. Harlie is a petite, precious, little bundle of joy! However, at the same time, Christy and Tom both know that Harlie does look different and that she does have significant complications that will be challenging and stressful. It will be most helpful to Christy and Tom if you don’t try to minimize the issues Harlie does have, because this makes parents feel invalidated as if they are “only focusing on the negative.” Christy and Tom are Harlie’s advocates and they have to address her complications realistically and assertively to ensure that the doctor’s do all they can to help Harlie have the best life possible. You will be most helpful to this family by being present with them, loving them and loving Harlie. I know from experience that parents are often very apprehensive to show their child to others when they know that people will look at their child and notice their “differences.” But I challenge you to notice the beautiful, perfect things about Harlie! There is a lot to notice. I know that Christy and Tom are grateful for all of your support. They are very lucky to have each and every one of you. Please take care of yourselves, and take care of this very special family too!Fondly, Kristen Caminiti

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