Are babies born at home getting hearing screenings? The short answer to that question is no. While many states have met the goal of 95% of newborns screened in hospitals, many homebirth families still do not know about hearing screening or are screened at rates below 30%.
Contrary to popular belief, families choosing homebirth are not poverty stricken, bead-wearing flower children eschewing all medical care. A common thread among families is the firm belief that they receive a higher quality of personalized care before, during and the six weeks following birth. As one of these homebirth moms, I valued the access to information about my baby's development that was far and beyond what we experienced with an OB and our first hospital birth. I wanted to choose who would be present at our birth. I counted on the emphasis on preventing problems through careful diet, exercise, intense monitoring prenatally and the homebirth philosophy that birth is a family process.
In the end, our second homebirthed baby enjoyed all the careful care we had hoped for, except access to newborn hearing screening. The mandate had just passed in our state that year, and the registered midwives were not yet aware of the process for testing.
Since then, our midwife, Pam Crowl and I have become active in the region's hearing screening task force. While babies can be screened in the hospital as outpatients, homebirth families typically do not feel comfortable in that environment. Midwives simply suggesting that parents "call the local hospital" are not providing a real referral for follow up. In an attempt to win over more midwives to extending the effort to make hearing screening easy for every homebirthed baby, we wrote our story in letter form. Pam sought training and access to equipment to borrow from the Health Care Program for Children with Special Needs (HCP) in our county for her own screening "clinics" for babies born under the care of any midwife in the region. We have spoken with other professionals from the EHDI system at state and local midwifery workshops. Other areas of our state have come up with other solutions. Some school based audiologists are providing newborn screenings in their offices. Some HCP contracted audiologists will provide screenings during home visits. Not all audiologists would call themselves qualified to screen newborns, so creating a skilled network is critical.
Because some homebirth families selectively immunize, babies may not be in doctor's offices as frequently as the immunization schedule requires, putting these babies at risk for late identification, at least compared to pediatrician offices who routinely check screening and hearing status.
Below are the letters we wrote through the HCP program to every registered midwife in the state. All of these efforts have resulted in more screenings for babies, but there is more to be done in this complicated arena. For more information on midwifery in your state, see http://mana.org. We hope that sharing this information will assist other EHDI programs in creating more homebirth friendly systems in their regions.
Dear Colorado Midwives:
We are writing to tell you the story of our daughter, Sara Madeleine, born at home. Parents choose a homebirth for many reasons. My husband and I have worked in the health care profession for many years and know firsthand that a hospital is a great place to have available but also one to avoid if at all possible. A homebirth and midwifery care provided the best possible opportunity for a normal pregnancy, a healthy baby and a family centered birth.
Maddie was born on the last day of summer. She received a thorough examination by our wonderful midwife at birth and continuing through the follow up visits, and also at one week by our naturopathic physician. She was a very alert baby, who seemed so conscious of the people, sounds, and movement around her.
As Maddie began to crawl and venture further from her parent's laps, we noticed she didn't always turn to her name or come when we called. We did the classic parent test: dropping pans behind her head. Those around us who know Maddie laughed at our concerns. She seemed to pass another examination at the doctor's office but this wise woman referred us to an ENT. We were stunned to learn that Maddie had a severe to profound loss and couldn't possibly have heard our speech. When tested at 16 months, she had the expressive and receptive abilities of a six-month-old or younger. We had no idea that deaf children might respond to some sounds, but not speech.
Imagine our grief that this beautiful child had not heard a single lullaby, an "I love you", or even the names of her siblings - ever. The hearing loss was identified at 14 months, so Maddie had lost much critical time and the five months in utero of exposure to speech. We wondered if she would ever be able to talk or understand speech, to write, and to be able to support herself.
Since 1999, a simple hearing test is available to all Colorado newborns. The babies sleep through the test, and it is over in a matter of minutes. Homebirth parents may take their babies into any hospital equipped for newborn hearing screenings. Some hospitals have agreed to move the units into the lobby of the nurseries so that home birth parents don't have to enter the nursery itself. These tests are generally given by volunteers, and so many babies come in for follow up tests that no one need know about the homebirth or anything else about the baby. This outing was our first trip out of the house with our next born daughter, and no one at the hospital gave us any trouble about anything whatsoever. Another option is locating an experienced school district audiologist, who provides free screening tests for any babies in their district. Some types of hearing loss are entirely correctable if caught early.
There will always be those parents who choose not to have this or other tests. We hoped that sharing our personal story would give you added urgency to encourage parents to have their children tested before 3 months. While parents do not have to comply, the Universal Newborn Hearing Screening law does state that a birth attendant must give full information regarding the importance of the test and where to obtain it.
We know that if the midwife believes in the procedure, her clients are far more likely to look favorably upon it as well. Hearing loss occurs far more frequently than PKU, hypothyroidism, cystic fibrosis, or a whole host of conditions routinely screened. Also, hearing loss discovered early and given appropriate intervention (even for those not desiring the amplification of hearing aids) can enable a child to enter school with age appropriate language abilities. Certainly there are some forms of hearing loss that are entirely correctable if caught early.
For our daughter, deafness is a part of who she is forever. Maddie is a skilled sign language user and a fair speaker at this point. She gives every indication of being able to read, discuss, and possibly out - argue her peers in the future. She's one of the lucky ones: many late identified children stay behind their peers in language development all through school years. The average age of children identified after birth is two and a half years. We cannot emphasize enough that a hearing loss is invisible. It is not a simple thing to detect, and cannot be accurately done without equipment. Our daughter could have had access to communication at birth if we had known sooner that she couldn't hear. For her sake and for the sake of future Maddie's, we hope you will take the time to educate yourselves on this issue so that you can encourage your clients to pursue testing. We would be happy to talk with you personally, or to any of your clients.
Sincerely,
Sara Kennedy
And this from Pam Crowl, our midwife:
My job requires that I provide my patients with large amounts of information. I encourage them to read and seek out more information on their own and "do the homework". I want them to truly give informed consent when they accept or refuse a procedure. A hearing screen is one of those procedures each midwife should be informing her/his patients about, along with newborn screening labs. I have always told my new parents that I cannot adequately test their babies' hearing and that they could have the baby screened through the local hospital. Most decide to wait and see how the baby reacts to various stimuli. Very few have taken their baby in and had the hearing screen done. The biggest objection to this procedure was not any harmful effects to the baby, but the location of the testing. Homebirth families want to stay out of hospitals. This testing is now offered out-of-hospital and does not need to be done immediately after birth. The baby can be screened in the first three months.
At birth, Sara Madeleine was like any other healthy newborn. Observant parents caught her deafness at fourteen months. This is approximately a year sooner than usual without a hearing screen. She is a bright child and is catching up. If she had been screened in her first three months, she would not have had to "catch up" at all. Please provide your parents with this information so that they know where and how they can get their newborn's hearing screened.
Sincerely,
Pamela J. Crowl, RM, CPM
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