Donovan Hill
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Easter 2004
My husband and I planned very well for the birth of our first child or at least we thought we planned well. After over a year of trying for a baby, we finally got lucky. My pregnancy was totally normal. We took 12 weeks of natural childbirth classes. I ate totally healthy, no caffeine, no nurtrasweet, organic meats, milk and veggies…. a high protein diet! (I gained 40 lbs on my short frame!) I even temped fate by writing a birth plan! (Ha!) The week before I delivered, the doctor warned me that the baby was going to be big and that the highest risk of c-sections was for short women with big babies. The warning never fazed me. On May 27th at 4 a.m., 28 hours after my water broke, Donovan was born via c-section (for failure to progress) weighing 8 lbs. Donovan apparently didn't read my birth plan! That was the beginning of a surreal and frightening series of events that really haven't stopped yet. Ben and I had absolutely no warning, no clue as to what was in store for us and for our newborn baby boy, Donovan.
Donovan had breathing problems from birth. My husband Ben went with Donovan after his birth and was the first to report back to me while I was in recovery from the c-section. I had never seen my husband cry before that day, but we both were so scared and shocked that we didn't know anything else to do but cry. I had seen Donovan only briefly in my husband's arms before they took him away and the only thing I could think about was seeing my baby again. They took me in on a stretcher to see him in the nursery for the first time. Donovan was resting peacefully on a warmer with a Plexiglas round oxygen hood over his head. He had wires and all sorts of things attached to him. He looked healthy with long legs and fingers. Looking into his little face for the first time, I saw the most wonderful, beautiful and frightening thing I had ever seen in my whole life. It was like looking in a mirror at myself. I never expected him to look so remarkably identical to me. I was head-over-heals in love with this boy, more than anything I had ever known before. No one ever really prepares you for how much you're going to love your baby and you just can't know that until you experience it for yourself. He was our baby and from that moment on, all Ben and I wanted was to get him healthy and get him home.
Donovan couldn't maintain his oxygen sats. He also had a "temper" the nurses said. "He holds his breath." I just could imagine what they were saying. He looked so healthy. But, as time went on Ben and I witnessed what the nurses reported right away. After the 3rd day, they transferred him to the NICU. At first, they thought that his ribs were broken. They did x-rays and tests, but no answer. Donovan kept having oxygen problems. After several more days with no improvement, we began suggesting we move him to a larger hospital for children. The doctors agreed and we decided on St. Louis Children's Hospital. June 6,
2003 Donovan and I took our first jet ride to St. Louis escorted by an expert transport team from Children's in St. Louis. As Ben and I stood by, swarms of residents examined Donovan on arrival at the NICU. Soon we met Dr. F. Sessions Cole, our attending physician. (Dr. Cole is the head of Newborn Medicine at Children's in St. Louis and Washington University School of Medicine. We HIGHLY recommend him. I have known professionally and personally many physicians and Dr. Cole is by far the most brilliantly talented and compassionate man I have ever met.) By that time, Donovan was in full form, going into one of his "breath holding" spells. Dr. Cole stood by as the residents examined and bagged Donovan. He paced back and forth, saying to himself "Come on baby breathe, come on baby breathe…" For what seemed to be 15 minutes, Donovan turned his usual shade of blue, clamped down his body and airway, stiffened and then went limp. Once this was all over, Dr. Cole turned to the residents and said, "Okay, people, let's get on this!" And on it they were. Donovan had every test imaginable. Every day was like a race to diagnose this mystery that was plaguing my son and daily jeopardizing his life. It was a nurse that first mentioned another possible diagnosis. She casually said "Ondine's Curse." I was dumbstruck and horrified. "It's not that bad. I'd rather have that than anything else." I had no idea what the diagnosis meant, but around that same time there was discussion of a tracheostomy and a ventilator. Ben and I got on the internet and educated ourselves very quickly on Ondine's Curse. It is known as Congenital Central Hypoventilation Syndrome (CCHS). There are only about 70 cases in the United States. There are 200 cases worldwide. I could have sooner been struck by lightening than have a child with this disease. It is a diagnosis of exclusion, so they had to rule out everything else. Basically, there is nothing wrong with Donovan physically except that his brainstem is missing the genetic component that properly senses carbon dioxide. They think it is due to a gene copying error, but that's a whole other story. If you are interested in learning more about CCHS, I suggest contacting the CCHS Family Network at
www.cchsnetwork.org. Mary Vanderlaan is the president and she has been a great source of information and support.
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First good smile picture
Right after trach surgery
July 3, 2003, Donovan was six weeks old and he had tracheostomy surgery. Dr. Cole consulted with Dr. David Gozal at Kosair Children's Hospital in Louisville, Dr. Debra Weese-Mayer at Rush in Chicago and Dr. Rice in Wisconsin, 3 of the six physicians who specialize in CCHS. They all recommended the tracheostomy and the ventilator. Donovan did well with the surgery. He even nursed as soon as he awoke and wanted to eat. Ben and I began the task of learning his care. Children's was great. They really had us involved in his care as much as possible throughout, so nothing was a surprise. Dr. Cole and the team at Children's were able to appeal to my insurance to have private duty nursing added to my benefit so that we could begin the process of planning to take Donovan home. This is where having a great doctor and a good team is critical. They have the foresight to know what is required to take a child home with a tracheostomy and on a vent. We needed 24-hour care and nothing less. It was not an option. We would have loved to have anything else, but with Donovan's condition, there were no other options. Looking back, I know this is true. All of you out there who have a special needs child know this too and DON'T ACCEPT ANYTHING LESS! IT IS A MEDICAL NECESSITY! The better care Donovan gets as a baby, the better the outcome is for him in the long run. This is true for all children! It has held true so far for us.
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Our first day home
We finally went home August 15, 2003, almost 3 months after Donovan's birth. We have six nurses who provide 24-hour care for Donovan. Ben and I know how to do all Donovan's care too. We use Advantage Nursing in St. Louis. They are great and have gone above and beyond. We couldn't do it without them. We are fast approaching Donovan's first birthday. We went this year without even one additional trip to the doctor for a cold or anything. Of course, we went nowhere public (you can do that with an infant) through the cold and flu season. Donovan is now on the vent only at night. He is off oxygen most of the time, but we monitor his sleep regularly because he still sometimes does not maintain his oxygen sats while sleeping. He is growing and developing well. Although he does have some developmental delays, we fully expect him to catch up soon. Hopefully, he'll outgrow the breath holding spells (which have gone from 7 - 12 a day to 1 a day) and be able to transition to a c-pap or bipap machine somewhere between the ages of 3 - 6. We have survived this first year of our new family with the help of good doctors, good nurses, good family and maybe a little Zoloft! What a year it's been!
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Donovan's First Christmas
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April 2004
September 2005 - Update on Donovan Hill
Hello everyone! If you've read this far, you must have some interest in Master D (as our favorite doctor refers to him). Ah, he is that, the master, and so much more….. Much has happened since I first told our story and posted it on Aaron's Page. Mostly, Donovan has blossomed and grown into a toddler, fast becoming a little boy in his own right. (We did something right! Nice to feel and know that as a parent!) Let me recount the past year and a half.
June 2004 - we made our first visit to St. Louis Children's for our annual testing recommended for Donovan's condition. We had another EEG, holter monitor, MRI, swallow study, sleep study, carbon dioxide challenge, and developmental testing. Everything looked pretty good overall, however Donovan was aspirating on thin liquids at that time, continued to need the ventilator at night, and had a global delay developmentally of about 50%. The good news was that he still doesn't have seizures, he's never had aspiration pneumonia, and he has a normal response to CO2 except while in deep sleep. So, we continued for another year with a few modifications with the swallowing. We were able to take him from the bottle to a cup for drinking as he was only aspirating while drinking from a bottle. Thus, officially ending his supply of breast milk! He was a year old; it was time to end the bottles anyway! Donovan continued to have his therapies through our Early Intervention program in Missouri, called First Steps. He was also able to start Speech Therapy for the first time!
Oh, and we cannot forget attending the First Pediatric Tracheostomy.com workshop and meeting all the people we have come to know and love! It was especially eventful as we (Ben, Donovan and I) got to meet the Stempfel family. You see, Hannah Stempfel has CCHS too and it was the first time to meet anyone else with CCHS. We enjoyed that immensely as there are only 70 of us in the U.S. and to get to meet someone as close as St. Louis was fantastic! We know that this will be a friendship that will last a VERY long time!
August 2004 - Ben and I were able to participate in a hearing by giving testimony before a committee with the Institute of Medicine that was studying the use and safety of pediatric medical devices. For this, we can thank Dr. Cole for his kind recommendation to the committee for our participation. It was an opportunity to present information about what it is like to live with a technology-dependent child. This committee has since recently released their findings: http://www.iom.edu/report.asp?id=28277
October 2004 - check out the Passey-Muir photo! What a gem! Thanks to all the respiratory therapists for saving all those magazines for me! He's our little hambone!
News Flash! Donovan wins Passy-Muir
Halloween Photo Contest!
May 2005 - Donovan's second birthday. Yeah! Also, Melisande was able to attend the Tracheostomy Mom's Weekend in Phoenix, Arizona. What an amazing group of women! If we could bottle all the love, brains and energy these women have, we could change the world! (and I'm not kidding!)
Melisande was able to follow and present testimony to the Missouri legislature about First Steps. Our governor, Matt Blunt, decided that Early Intervention in Missouri was unnecessary. Ha! I was so proud of all the parents who came out in droves with their special needs children. We were able to save the program, but not in its entirety. We'll take what we can get! Ben and I were even on a local talk radio program to be interviewed about Donovan and our First Steps program.
June 2005 - Our annual visit to Children's in St. Louis. Pretty much the same testing barrage minus the EEG and adding a bronchoscopy. Interesting that the results were much the same as last year, with only minor improvements. We're on the vent for at least another year! We were tested this year for a MafB genetic mutation and for a genetic disorder called hyperekplexia, both of which were negative. He still has a global developmental delay of about 50%. He is capped during the day and on the vent at night. Donovan can crawl and walk a few steps, but not independently walking at this time. He continues to make improvements, but they are just slow or rather in Donovan time.
August 2005 - Donovan starts school two mornings a week at the development center. He rides the bus to school with his nurse. He is doing well, but has had to learn to stop blowing raspberries! (His favorite activity) We also found out that Donovan may have some sensitivity to spring and fall allergens. He is now on some medication for allergies until the weather changes!
October 2005 - We are making a trip to St. Louis Children's Hospital to see Dr. Anne Connolly, a neurologist. Donovan has continued to perplex his physicians, parents, and therapists with low tone in his torso and upper body. Although he is very healthy and large (3 feet tall and over 33 lbs), he continues to lag developmentally. He isn't making the kinds of gains we would like to see to gain some ground developmentally. Hopefully, this will be more information to find an answer to the genetic make-up of our son. As Dr. Cole says, "We're getting really good at finding out what Donovan doesn't have."
****A Note from Momma****
Ben and I have been so pleased with our beautiful son. We would like to know what specifically has caused the CCHS symptoms, since he has not tested positive for any of the genes involved in this disorder. However, we are coming to terms with not knowing. Donovan continues to grow and thrive anyway. We will continue to provide him with what his body tells us it needs. We have been very fortunate in many ways. We are fortunate enough to have good insurance, a strong, loving relationship centered around family. We are fortunate enough to have a strong, otherwise healthy son. We are fortunate to have excellent physicians and stable, excellent nurses. We are blessed to have a supportive family, friends and community. We have our ups and downs as all others do, but I don't think Ben and I could ask for more. We have everything we need and we have our family. This makes everything else pale in comparison. I never knew how much love a person could feel before I had Donovan. Ben and I have a unified, strong commitment to each other and to him. If anything can test a relationship, it's having a child who is medically fragile. However, together and with all our support, we are making it happen and actually enjoying every moment we can. People live their whole life never appreciating what they have been blessed with in life. Donovan gave us the gift of appreciation, love and happiness.
