September 1, 2007
Dear Governor Gregoire,
I am writing to you as a deeply concerned constituent of Washington State because I recently received the devastating news that funding for the Cleft Lip and Palate Care Teams (the Maxillofacial Teams) will be terminated by December 31, 2007. This news is devastating because cleft palates hit at the very core of mommies: we have created a baby we cannot feed. Statistics from the CDC show that the cleft lip and palate is now ranked as the number one occurring birth defect in the United States, and Spokane statistics reveal that our area has twice that rate, approximately one in 350-450 births (2003-2005).
I am the happy mother of a healthy eight-year boy who is cared for and monitored by the Spokane cleft lip and palate team; however, this has been a heart wrenching journey. Several days after my son Alex was born in October of 1999, I was frustrated and overwhelmed by postpartum depression when I was failing at nursing my newborn. I contacted my family physician, Dr. Michael J. Stephens, who diagnosed the soft cleft palate that was preventing my breastfeeding. Immediately, he referred Laurie Vessey to me, which was absolutely lifesaving. The medical labyrinth through which I was about to navigate was staggering, and the list of to-do’s was overwhelming. My baby needed surgery within the first year, and it seemed impossible to find a bottle that worked for him (it took 50 minutes to feed him two ounces), wean him to a sippy cup by six months, and put enough weight on him so that he could make it through surgery (he would not eat for a week after the surgery).
During the pre-op time, I pumped using a breast pump for four months. Because of the overuse of this machine, I was constantly needing to replace the tubes which I could buy at the lactation consultants’ office at Sacred Heart Doctors Building, but I was met by nurses who had no knowledge of the impossibilities of feeding a cleft palate baby and who were constantly telling me that I should breastfeed my baby. Can you imagine the guilt I already felt over making a baby with a birth defect and how that guilt was further compounded after hearing their comments? I was devastated. Fortunately, Laurie Vessey was there on my behalf and heavily advocated for me. After four months, I was exhausted and depressed, so my husband Sean and I made the decision to switch to formula despite the incredible expense. Also, we had to buy PediaSure to help Alex gain weight. Laurie was integral to our finding ways to buy it without going broke. She also was there to remind me of the simple things, like playing with and enjoying my baby, which I had forgotten!
When my baby was nine months old, he underwent the 4 ½ hour palate repair surgery. When summoned to the recovery room, the sound of his raw moaning (I have heard nothing like it before or since) and his swollen, bloody face were the first things I experienced. Blood seeped from his ears, mouth, and nose, and a piece of thread was sewn to his tongue so we could pull it out when he gagged. Although he needed to go back to the operating room for some minor adjustments shortly after, he was up and walking within a few days (he was solid on his feet at eight months!) For months afterwards, he wore little arm restraints made by Laurie—baseball-patterned material which held tongue blades that prevented his putting objects in his mouth as babies do. He wore those for about three and a half months until they were ragged threads. (Those little arm bands still hang in my office as a reminder for the gratitude I feel at how well Alex is doing and for the life-saving guidance by Laurie.) In addition, we had to blend his food as textured foods would destroy the surgery site.
Alex has recovered wonderfully. The concerns my family faces in the near and far futures are orthodontics, speech therapy, and the continued monitoring of his hearing and ear tubes (he had the tubes implanted during the palate repair surgery that were replaced three years later).
Every year in August during the anniversary of his surgery, I reflect on that year of defect diagnosis and pre-op/post-op care, and I wonder at how I managed. Facing the despair, depression, and grief felt impossible, and I almost ran away following the surgery. If it had not been for Laurie’s guidance, I would have been lost, and my son might not have received the appropriate treatment at the right time. Oftentimes, I think how awful and dark those times were, and I am in awe at the fact that my son’s birth defect was simpler than most. Those mommies and daddies whose babies have lip repair surgeries in addition to palate operations earn our high esteem.
A cleft lip and palate is NEVER just a cleft lip and palate: simple sewing is not the reality that we cleft lip and palate families face. We regularly see plastic surgeons, genetics specialists, speech therapists, orthodontists, oral surgeons, ear/nose/throat physicians, and hearing specialists. When all these professionals are present at the same place at the same time for our review boards, coordinated by Laurie Vessey, we feel secure that our kiddos are receiving the complicated care they need and deserve. We have come to depend on this dynamic team to direct us as to the next step of treatment--treatment that often lasts beyond their 18th birthday.
Please imagine yourself taking home a baby with such complex needs, and imagine what you would do without the guidance of the team lead by Laurie Vessey. I ache at the thought of our families in 2008 abandoned and left on their own. As mentioned before, the central issue in parenting our cleft palate infants is that we cannot feed our babies. The help from the Maxillofacial Team is invaluable, far too vital to be dissolved. Remember, statistics from the CDC show that the cleft lip and palate is the most common birth defect, but Spokane has twice that. Our children face a lifelong struggle of surgeries, treatments, and care to reach their full potential in life. (For more in depth information of care, please consult the 50+ page book Critical Elements of Care on Cleft Lip and Palate on the Washington State Department of Health’s website under Maternal and Child Health Programs.)
To maintain this honorable program statewide costs about $153,000 for one year, which is truly a small price to pay for a huge benefit. For the Spokane/Eastern Washington, Medicaid ($61,000) and the Spokane Regional Health Department ($35,000) match the funds the program receives from the state. Without these state funds, the other two resources disappear. If you truly believe in health care for all children, please do not neglect this large group of children and families. Please keep our most precious resources smiling.
I deeply thank you for your taking the time to address this crisis facing our cleft palate families should this program be terminated. George Washington Carver’s statement should be the theme of all of our lives: “How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong—because someday you will have been all of those.”
Prevail,
lynne lumsden
grateful mommy of a cleft palate baby
2710 South Myrtle
Spokane, Washington 99223
(509) 768-9105
lynnelumsden@yahoo.com