Dietrich’s Journey

By Jodi Dietrich

 Chris and I were young newlyweds when we found out I was expecting our first child. We were elated to become new parents. We had no idea that the journey ahead of us would both forever change our lives and be an incredible learning experience.

 How Do you Spell That?

After a long pregnancy of morning, day, and night sickness, as well as acid reflux and a kidney infection, our first baby boy was born in August, 1999. I had an emergency c-section due to complications during delivery. While I was dazed and confused, a big celebration was happening over our 8 pound, 15 ounce baby boy Tyler Joseph. Once coming back to awareness, I realized this perfect baby in my arms was ours forever. I couldn’t get over how perfect he was and also how extremely hungry he was. Due to the difficult delivery, Tyler and I stayed in the hospital for four days.  Tyler was circumcised on the morning we were supposed to be discharged to go home.  After the circumcision, Tyler was bleeding excessively to the point where he was admitted to the special care nursery so a nurse could continuously hold pressure with gauze on his circumcision to stop bleeding. Once his pediatrician realized he was not going to stop bleeding, our four day old son was prepped and placed into surgery to try and control the bleeding.  After several blood transfusions and many dressing changes, he was diagnosed with having severe hemophilia five days following the circumcision. Chris and I were so confused; I had no history in my family of any type of bleeding disorder. We were speechless. Neither one of us had ever heard of hemophilia.  I remember saying to the doctor “How do you spell that?” Tyler was released from the newborn special care nursery fourteen days after his delivery. 

Once we gathered our thoughts about our new situation, we moved back to the Denver area from Casper, Wyoming to be close to the Hemophilia Treatment Center affiliated with University Hospital. Chris decided to give up his business as a full time Farrier and Blacksmith to provide the type of medical insurance that was appropriate for Tyler.  Chris stepped in to the corporate world. The three of us were off on our journey and learning rapidly about hemophilia. 

Two years followed with many ER visits, a couple of serious surgeries for Tyler,  and not to mention the complication called an inhibitor that affected his medicine he took for his hemophilia.  He had suffered for a year with the inhibitor, and admittance to children’s hospital ICU and many, many, many trips to the Hemophilia Treatment Center in Aurora at the Fitzsimmons campus.  Finally, after going through all of that, and we felt educated and competent to handle his medical condition, we realized there was so much more to Tyler’s life. He brought joy and happiness to us and to the world. We began to discuss how perfect he was, and even though he had hemophilia, to us that was such a small thing in the big picture. We were ready to start trying for number two.  After we found out I was carrying number two I miscarried shortly after. Months went by and my desire to have another baby grew stronger by the day until six months went by and we were expecting again.

Though nervous through the first trimester, we made it through. When I became pregnant, I was employed as a certified nurse assistant on the post partum and nursery unit of a hospital. Not only was I extremely excited to be carrying our baby, I thoroughly enjoyed my new job. I loved everything about my job which included the newborn hearing screens. 

Because Tyler had hemophilia, we knew the possibility of having another boy with hemophilia was fifty percent. So, at seventeen weeks, I had an appointment with a perineonatologist for an ultrasound to confirm the sex of our baby. I was scheduled to have a repeat C-section just after thirty seven weeks along but we needed to know the sex of the baby to be prepared for delivery if the baby was a boy. We found out our baby was a girl. After that appointment I continued to have a phenomenal pregnancy, with one exception: the ignorant people who kept saying “Aren’t you glad you’re not having a boy?” Knowing why they were saying that Chris and I would always reply, “Why would we be glad were having a girl?” They would say, “A girl can’t have hemophilia so you won’t have to deal with it.” Though I was disgusted and tempted to just walk away, I would reply:  “We would be happy to have another little boy with hemophilia. Besides just because were having a little girl doesn’t mean they won’t be affected by hemophilia or anything else.”   

We loved preparing the nursery, and getting a bassinet that even played music. I was ready to have our baby girl with no thoughts of anything being wrong. Three weeks before the scheduled C-section, I had a vivid dream one night that my nurse came in my hospital room, handed me the baby, and said to me in the dream, “You know, she is not passing her newborn hearing test.”  When I woke up, I immediately told Chris about this vivid dream I had and he replied “hmmm” and then said that he had been feeling that something isn’t quite right with our daughter either. Knowing my mother’s intuition hadn’t led me astray yet, I made a mental note and moved on not thinking too much about it.

September came and Graci Oriana was born at 7 pounds, 12 ounces, and healthy as can be.  Chris, Tyler and I were so happy to have her join our family. Again, I was so amazed at how perfect and beautiful she was – and again with quite an appetite!   While I was recovering from the c-section the second day my nurse came into my room and handed me Graci and said, “You know, she’s not passing her hearing screens.” I instantly said “Oh my, I had a dream about this.”

At that moment I knew she had a hearing loss and came to terms with it and was instantly prepared to embark on a new journey about hearing loss along with all our knowledge about hemophilia. When I broke the news to Chris he had the same reaction. I did feel so thankful that Graci was here on this earth.  I knew hearing loss itself was not life threatening. After almost losing Tyler as a baby from bleeding, I had comfort she was going to live. Once out of the hospital we had the series of hearing tests to confirm Graci had a moderate to severe sensory neural hearing loss. We had to convince and help our own pediatrician through the grieving process that Graci truly had hearing loss. She hadn’t thought it possible for a family to have two children with two very different diagnoses. By two months of age we had CHIP services coming into our home. By three months of age Graci was wearing her hearing aids and by six months of age we decided to have a sign instructor come to our house to learn sign so we could communicate with deaf/hh individuals in the community, and wanted to keep that option open for Graci to use sign as a way of communication.  We also knew of the possibility of her hearing loss progressing.  Without knowing what the future would bring, Chris and I wanted to not be so set on communication for our daughter so we decided to go with the flow. 

Just like the diagnosis with the hemophilia, there was no family history on either side of hearing loss. We didn’t know one person who was deaf or hard of hearing. We were absolutely starting from scratch again. 

A plus we earned from the first child was that we're not afraid to ask questions or tell a doctor or professional we did not agree with them and we would be getting a second opinion.  Our advocacy skills we had acquired from the first child definitely helped us for the uphill battles we have had with insurance companies and professionals regarding Graci.

 Appointments and Advocacy: Is There More to Life?

We were in shock to find that the amazing insurance we had (that Chris had switched careers for) so Tyler would be covered did not cover anything for Graci.   Soon after that realization dawned on us regarding ongoing struggles deaf and hard of hearing individuals face on a daily basis. Negative thoughts started coming to my mind when Graci was six months old. I started thinking of all the struggles Tyler would have to face and has already faced with hemophilia and all the struggles Graci would have to face socially, emotionally, and academically. I would at times get so angry with family and friends because they would say, “God doesn’t give you what you can’t handle.” How I hated that saying! I kept thinking that I didn’t know if I can handle this. I’m just a mom, and I was so tired.  I was so tired of putting Graci’s hearing aids back in her ears every five seconds. I was tired of going to the audiologist every three months and thinking none of these appointments are covered by insurance.  I was so tired of making appointments for the CHIP facililator.  I was so tired of infusing Tyler every other day which took a half hour to an hour.  I was so tired of keeping up with pediatrician appointments when Tyler and Graci would get sick.  During this phase Tyler had chronic ear and sinus infections.  I was tired of trying to adjust my work schedule so Chris and my sister could be with the kids because we could not afford day care.  I was just tired.  I never had negative emotions towards Tyler and Graci.

I was worried that if I was tired having to go through all of this I knew they had to be.  All I wanted to do was play and have fun with Tyler and Graci and not have to worry or stress about everything else.  When Chris would come home from work, I just wanted to tell him that we had a great day, that we had no appointments, no phone calls and just learned and played all day.  Instead I felt like I would hand him a huge amount of stress from the day.

Chris and I had support from some family and friends but we did find ourselves pulling away from some because they could not understand nor grasp what we were going through.  We found ourselves listening to their life’s complaints and thinking…”Why are they complaining about that?”  We also were not in a happy, healthy place in our lives to really listen or understand their problems. 

Finally, a turning point came one day.  When Chris was a farrier, he had a client who was a pastor.  For some reason, I looked up his phone number and called him.  I asked him questions about his church. He started asking me questions about Tyler and asked how he was doing because he remembered his situation.  I then told him about Graci and how she was hard of hearing. I poured everything out like a waterfall to this man.  I told him how frustrated I was with the saying “God doesn’t give you what you can not handle.” He validated me and said, “You are right. God does give you what you can’t handle.”  Shocked and silent with what he told me, he then said, “But God will provide you tools to grasp to help you handle what you think you can not handle.” That moment in time for me is priceless, that is all I needed to hear.  Contemplating that conversation and that statement for days and sharing with Chris what the pastor said, I finally had a positive light bulb moment.  My outlook for our journey totally changed.  I began to think yes, Tyler and Graci will have challenges to overcome but as long as Chris and I teach them to grasp the tools that has been provided for them they will be successful.  I then realized the only way to teach the children how to grasp tools in life was to show them.  We had to lead them by example. 

I started embracing Graci’s CHIP program more and started thinking about her wonderful tools to help empower Chris and me with knowledge to raise Graci with her hearing loss. I embraced the audiology appointments, though still frustrated that they were not covered by health insurance. Many of the frustrations I had toward life and the things I could not control I began to think of as the tools we needed. Chris and I started excersing and eating more healthfully. I realized I could have fun with my kids while we were waiting at the doctor’s office. We began to play all the time and we were not at home.  I did not care if other people were staring at me singing “Old McDonald had a Farm” in public.  I was teaching language to my kids and having fun. Chris and I started going fishing and hiking again with the kids.  We had extra bags in the car with medicine, hearing aid savers, batteries and more, but we were figuring out how to adapt and still have fun.  We brainstormed about what stressors we could eliminate from our lives and we decided my job was more of a stress for the whole family then it was financially beneficial.  So I quit.  I started reaching for tools life provided to help us pay bills and live on Chris’s income.  Chris and I started talking about our goals and dreams we had before we were married.  We realized those did not need to change because both of our children had two very different conditions.  One goal we had was to move to the Western Slope of Colorado.  Chris and I set out to do that and we did.  Graci was transitioning from Part C services to Part B… and while it may not have been the best time to relocate, we learned a lot. 

 More Surprises on the Way

Nine months after we made the transition, the company Chris works for transferred us to another part of the Western Slope.  We did it, we could handle it.  Tyler and Graci were happy.  Graci was in a mainstream preschool with itinerant services and saw a private speech therapist.  Tyler was medically taken care of as well.  Our stressful lives were manageable and we were having fun.  In the fall of 2006, we found out I was expecting number three.  We were all so excited and could not wait for June of 2007 to come.  Morning sickness and all the other annoying side effects of pregnancy came and went.  We knew she was a girl at our 17 week appointment, just like in her sister’s prenatal care. I rarely had thoughts that she could be hard of hearing.  Finally, the June day came when EvaMarie Faith completed our family. I had the scheduled c-section and had a wonderful experience.  EvaMarie was born perfect and just like the others, I was amazed with her.

Of course, we were a little bit anxious when it came time for the newborn hearing screen but nothing had given me the feeling she was hard of hearing.  WRONG!  EvaMarie failed in her left ear and passed in her right ear. Chris was so serene about it. I, on the other hand was not serene this time around.  I thought are you kidding me! We’re three for three. All three of our kids have “something”.  I remember telling Chris that he had to ‘own’ the girls’ hearing loss because hemophilia definitely comes from me.  I could not bear the thought of having to explain to all three kids someday that they have hemophilia and hearing loss from me. What is wrong with my genetic code? 

Hearing test after hearing test and a couple of trips to The Children’s Hospital Audiology department for a second opinion, and we finally confirmed that EvaMarie has a bilateral hearing loss. Her left ear is moderately severe like Graci’s and her right ear has a mild loss. I admit when Graci was a baby it was easier living on the Front Range for diagnostics. So now that we had EvaMarie’s hearing loss pinpointed I pushed for hearing aids to be placed immediately. I knew the sooner EvaMarie was fitted the better. This time around Chris and I had experience. 

Slowly I dealt with my feelings and allowed myself to grieve about EvaMarie’s hearing loss.  Why grieve about number three? I still can not explain why. But I’m glad I allowed my self to grieve and I appreciate that Chris supported me while I was grieving. We clearly knew at this point the hearing loss had to be genetic, so even though I didn’t really want to know where the genetic component came from we needed to know if there were any medical conditions that went with the hearing loss. EvaMarie was also born with an ear pit on her right upper ear. After seeing the genetic counselor, the results came back that the girls have Conexxin 26, the most commonly identified genetic hearing loss.  Both parents have to be recessive carriers of the gene. Well, Chris and I get to share the emotional affects of the girls’ hearing loss. 

EvaMarie is now eight months old and takes her hearing aids out constantly and of course always has them in her mouth. (Hearing aids are really more resilient than we are led to believe.) I had to laugh at myself because five years ago I was so frustrated with constantly putting Graci’s hearing aids back in her ears and now I celebrate that EvaMarie has made a developmental milestone of pulling her hearing aids out. Go figure!  Now, EvaMarie has CHIP services twice a month and Graci is in Kindergarten with itinerant services and Tyler is in second grade doing well.  We moved again into the mountains when Chris’ employer transferred him four months after EvaMarie’s birth.    

Now when Chris walks through the door from a long day at work, I usually now greet him with “We had a great day!”  When Chris and I put our three children to bed at night we never think that poor Tyler has severe hemophilia, or poor Graci has a moderately severe hearing loss, or poor EvaMarie has a mild moderately severe hearing loss. We say to each other -- look how perfect they are, and look how beautiful they are.  Their individual personalities outshine medical conditions and hearing loss.  They are just kids who are allowed to be kids everyday.  Chris and I would not change our life’s journey for anything.