“Our Miracle”

        Susan “Copeland” Hemauer was born April 17, 1998.  God was by her side and she proved to be a fighter long before she ever came in to this world.

        When I was 7 months pregnant with her, on March 17, 1998, I had an AVM (Arteriovenous Malformation) rupture in my brain. This is a spaghetti of veins and arteries that could not handle the extra blood flow that a pregnancy brings.  Fortunately, it occurred in the middle of the night when my husband, Keith, was home and the ambulance was immediately called.  Fortunately, we lived very close to a hospital in Washington, D.C. (George Washington University Hospital) that specialized in Neurosurgery. And fortunately again, the AVM was situated in a place in my brain that only affected the motor skills of the left side of my body.

        I began having contractions that night and we were afraid that Copeland was going to join us way too early.  But she proved to be strong, forgave me for this brief interruption and stuck with me.

That night, the doctors then  “glued” the veins and arteries shut in hopes of preventing another rupture until after Copeland was born.  Knowing that they couldn’t risk me going in to labor, they began to give me steroids to boost up Copeland’s lung growth and we planned a C-section 6 weeks before her due date.  A Craniotomy, to remove the AVM, would be done after Copeland was born. In the meantime, she kept with me as I went through a lot of physical therapy to re-gain my ability to walk and use the limbs and extremities on my left side.  The rupture had also caused some blood to travel through my Optic Nerve and settle behind my Retina causing a situation called Terson’s Syndrome. Basically, I couldn’t see.  My sight shifted between having large black spots in my vision to looking like I had wax paper over my eyes.  They were pretty sure my mobility would come back. Because of the location of the blood, they weren’t so sure my sight would. My worst fear, of course, was that I wouldn’t be able to see Copeland when she was born.  That was a horrible feeling.

        As I said, the day Copeland was born was a planned C-section.  I was one of few women who actually gets to know when their baby is going to come.  Even so, my makeup and hair still looked awful because I couldn’t see to put myself together correctly.

        That was going to prove to be the least of my concerns…

        When they delivered Copeland I kept listening to hear her cry.  By that point, that was all I cared about.

        I should tell you that during my pregnancy, my alpha-fetoprotein blood test came back as a false-positive.  Although false-positives on this test are common, it was uncommon due to the fact that I was only 28 years old.  So early on, Keith and I were able to prepare for the “what if” scenario.  We went through the possibilities and knew that whatever child God had prepared for us would be the most perfect being in this world.

        And she is.

        Before they took her out of the delivery room, I got to see her briefly but between the hat on her head and my eyesight comparable to having a ball cap down over my eyes, nothing about her features seemed out of the ordinary.  They did tell me that they needed to take her in to the Neonatal Intensive Care Unit though and that I would be able to see her after my anesthesia wore off and they had stabilized her breathing.  Well, this took hours and seemed to be forever! The nurses were kind enough to take the picture below and bring it to me. I taped it to my bed and stared at it until I got to see her.  Her first baby picture.

        In the meantime though, my doctor came in and told me that Copeland was born with a craniofacial syndrome that they hadn’t been able to diagnose yet but thought it might be Goldenhar.  They were contacting a Geneticist at Children’s National Medical Center to come, make the diagnosis and talk with us.  I really could have cared less and most of what was said to me at that point went in one ear and right out the other.  Like I said, all I cared about was that she was alive, she remained that way and when could I see her.

        Finally, the head nurse of the NICU, broke the rules and allowed me to come in. They wheeled my big hospital bed in between all those little preemie beds that lined the NICU and I finally got to see Copeland and hold her for the first time.  Wow!! How do you describe that feeling? It was the most beautiful moment of my life and she was the most beautiful baby I had ever seen!  My life had suddenly changed and had a lot more meaning.

        I should mention here too that even though Copeland was 6 weeks early, she weighed 7.5 lbs.  I’d say God and those steroids were doing just fine.  After spending only 2 weeks of the month expected in the NICU, she got to come home. It took a while for both of us to get the hang of the cleft palate bottle but once we got it, she started thriving and took off.

        Copeland’s Treacher Collins presented itself with bilateral Microtia/Atresia of the ears (closed and malformed outer ears), a small chin, unilateral choanal atresia (one nostril closed), and a cleft palate.  Hmmm. Which did we concern ourselves with first? Pretty much all of them.  The ears had to be addressed immediately so that we could get her a hearing aid. The small chin had to be addressed immediately because of the breathing difficulties it caused along with the choanal atresia and the cleft palate had to be addressed immediately because of the feeding problems it created.

        By the time of her 1st birthday, she had had her choanal atresia repaired and her cleft palate closed.  Until that point, we used a cleft palate (squeezable) bottle and a preemie nipple to feed her.  She had started eating solid foods but that was difficult because she would hold it in her mouth and it would eventually come up through the cleft palate and through her nose.  A bit disturbing to those around us when she ate in public…

        She got her hearing aid at 3 months old and we immediately began speech therapy through the John Tracy Clinic out of California.  After reading all the different communication methods (Total Communication, American Sign Language, Cued Speech and Oral), I nervously chose Oral but continued to teach her some signs.  This turned out to be the best possible choice because Copeland has responded to it so well. I breathed a sigh of relief when she finally began talking. She can now talk your ear off about everything and anything!! She is even testing above her age level in vocabulary and comprehension.

        When Copeland was 14 months old, she had a second sleep study to determine if she was having sleep apnea.  Since she had left the hospital she wore an apnea belt around her chest connected to a monitor.  She also would sleep with her head almost at a 90 degree angle. When this sleep study came back abnormal we realized that problems that should have been resolved as she got older and grew were not getting better. While waiting for the 3rd sleep study appointment, she got a cold and her breathing became incredibly labored.  She would take breaks in her breathing when she slept and we would hold our breath until she would start back up again. Obviously, something was very wrong and she began on Oxygen immediately until the surgeries could be scheduled.

         Before her 2nd birthday, Copeland would have a Tracheostomy, Tonsillectomy and a Jaw Distraction.  The cold had made her tonsils swell up and almost closed off her throat completely.  This just highlighted the problem that her airway was much narrower than originally believed.  Outwardly, Copeland’s jaw did not seem as severe as many other’s with Treacher Collins.  It was deceptive and needed to be corrected.

        Receiving the trach was very scary for all of us.  As many with a trach know, there is a lot of maintenance.  You can’t allow the trach to get plugged, you have to keep it suctioned to prevent infection, change it regularly and keep it clean and so on and so on.  There was also the added concern about her speech. Would her speech and vocabulary be able to continue to develop and what about her articulation?  Well, the Passy-Muir valve waylaid our fears about that. She began wearing it before we even left the hospital.

        The trach stayed in for a mere 9 months and was removed after a successful but intense and difficult jaw distraction and her jaw was wired shut for 3 ½ weeks.  Her breathing is now very stable and she even scares me at times because she sleeps so soundly that I have to go in and stare at her chest until I see it moving.  Isn’t that what all mothers do though?

        My husband and I fully believe that God has something very wonderful planned for our little girl.  God has been with her as she has pulled through so much from a bumpy ride in the womb to a very painful jaw distraction that we know there is nothing that this life can throw at her that she won’t be able to handle and won’t be able to trust in God to carry her through.  Already we know that she has inspired so many by the energy, determination and spirit she has shown through all of her surgeries.  She is proving to be very bright, very smart and has the most gentle spirit. Copeland loves to sing, she loves to paint and color, she absolutely loves music and most of all she loves being read to and “reading” to her animals.  Her imagination is limitless and can turn her blanket in to anything her mind can think up.  It is great fun seeing her develop and grow in to a beautiful little girl.

        Everyday that she discovers something new, we are amazed by Our Little Miracle.