One of my closest friends called the other day. She was looking for information and advice on babies with hearing loss. Her grandchild has just been diagnosed with a hearing loss. She knew to ask me because all three of our kids have hearing loss, too.
I think my friend was a tad bit surprised by my reaction to her news. I wasn't sad or upset. Actually, I was just the opposite. I was happy for their family. Her grandson's hearing was tested as a newborn before he left the hospital. The baby had a follow up hearing test in an audiologist's office and his hearing loss was diagnosed at that appointment. Straight forward and exactly how it is supposed to go. Her grandson will be fitted for infant-sized hearing aids and he will be fully hearing before he even figures out he has hands. That is such a wonderful blessing! My friend and her family are understandably sad at the moment because they just found out their sweet baby doesn't hear everything. Luckily for them, they have no idea how difficult it was even 25 years ago to get hearing loss identified in children.
I know only because our family was caught in the nightmare of fighting to get our children's hearing loss diagnosed before there were newborn hearing screens, back in the early 1990's when doctor's relied on ringing a bell to see if a baby could hear. It was stupid, inaccurate, and delayed the proper diagnosis by years.
I still get upset when I think about the hell I went through to get our oldest child's hearing loss identified, then relived the same trauma with our second child who was also diagnosed late. Thankfully, by the time our third child came, the technology to test a baby's hearing at birth was available and he got his hearing loss identified right away. That early (because newborn diagnosis is SO much earlier than the what was happening) identification made all the difference in the world to our family and our baby. Because of the uniqueness of having 3 children with the same hearing loss and experiencing differing ages of identification, our family was asked to participate in publicizing the importance of testing babies hearing at birth. Of course, we jumped on the opportunity. We wanted to make the nightmare of late diagnosis a thing of the past.
We did several years of newspaper, magazine, tv and video interviews, telling our family story to anyone who asked. It felt so good to be involved with others who were committed to the cause of having every child's hearing tested early in life. We also had our share of mishaps and humiliations during that time. Being judged in the public eye wasn't anything I was prepared for. I was speechless the first time I read Letters to the Editor newspaper comments questioning why we had three "defective children" and how our children were a drain on public health care and education systems. Wowzers. I can only imagine how awful mean-spirited comments would be now, with the internet. The worst of all was what Rob and I like to call our Washington, D.C. Experience. Click the link if you want to know what happens when unsophisticated people with small children show up in Washington. Yikes! My face still burns red when I think about that special time. Let's just say sacrifices were made to bring Newborn Hearing Screens to every state in the US and it was worth it.
The other big change since my kids were little, is the availability of support for families with children who have hearing loss. When my kids were small there was no easy way to get advice or information. The internet was in its infancy, not that it would have mattered because no programs existed that offered unbiased information for all the different ways hearing loss can be addressed. It is overwhelming and difficult to make decisions regarding communication styles while you are still in the beginning stages of grieving your child's hearing difference. To be blunt, it sucked.
I told my dear friend to contact Hands and Voices in her area and they will answer their family's questions and talk through the decisions that must be made. Hands and Voices will be there to support that sweet baby and his parents all the way through infancy, early childhood and school age years. They are not alone and they don't have to figure it all out by themselves. What a precious gift for them!
Every year I make a point of accepting an invitation to speak at our local university to future audiologists. Before I speak the students watch a one of the informational videos our family made years ago. They see the now outdated clothes and homemade haircuts we sported, they watch me cry as I talk about the difficulties my two older children had because their hearing losses were diagnosed too late. Then they see the difference in our youngest child, the one who benefited from cutting-edge technology that tested his hearing at birth.
The best part of all is when I show up with updated family photos and give them the rest of the story. This spring I was able to say that our two girls have graduated college and their younger brother is following behind with one more year to go.
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| Jennifer, our first child |
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| Elise, our second child |
Yes, it is sad to have a beautiful baby diagnosed with any kind of special need. But the world is changing fast and things are getting better. I am humbled to know that my words from years ago, have actually come true.
"There will never be another child who has to go through what our kids have had to go through. We are so happy and pleased because this is going to change so many lives."
- spoken at the signing of the 1995 Colorado Newborn Hearing Screen bill, which mandated insurance companies to pay for testing babies hearing at birth.
The miracle has occurred and thank heaven we are alive to see it happen.
http://www.mormonmentality.org/2011/09/25/dressing-for-success-in-washington-d-c.htm
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