To begin with I want to say I don’t like to consider Avery “special”. I don’t like the term “special needs child”. I totally understand where the phrase comes from and why. I am not judging those that use the term or have chosen to associate themselves or their children with having “special needs”. I just choose to take Avery the way he is and we don’t catagorize him as a “special needs child”. He has a rare genetic disorder that causes him to be delayed. He goes to therapy and needs some additional help to build muscle tone and learn to speak. He is exactly the little boy he’s supposed to be. I deal with every day as it comes and try not to worry about the rest.
Everyone writes about their birth story. I’m not sure if the reason for telling that tale is to relate to others or not forget the details. When you have a child that is diagnosed with something right after they are born I’m here to tell you that the details of the actual birth sometimes get overshadowed by the diagnosis. I still remember all of my labor and delivery details (he’s only two folks) but the happenings after stick out more in my mind. I imagine that having a child with an unknown birth defect, or chromosomal difference or something far more tragic is harder than what we went through, but if my story helps anyone then it’s worth telling.
For the first 4 days after my son was born anything was possible. I had the new mom glow, the baby’s head had rounded out, we were doing fine with breastfeeding….and then the train derailed. We got a call on a Saturday of all days that something had come back on our son’s newborn pre-screens. My first thought was “he looks and acts great! They must be wrong.” The doctor that had been assigned to us at the hospital (more on this later) wanted us to come in. My husband and I were bewildered. I packed up the diaper bag and my new bundle of joy and we headed in. The next few hours after that my memory has thankfully tried to dull and blur around the edges for me. The doctor explained the tests, and the unusual results and sent us back to the hospital that Avery was born at. I remember thinking “what did he say about a genetic disorder?”. When we arrived at the hospital the nurses and doctor’s all circled around my now awake and upset newborn and tried any possible way to draw his blood. At this point he needed to eat so was upset anyway that mom appeared to be missing (I was sitting on a chair in the farthest corner away trying to find a happy place in my mind while my sweet baby wailed) and people who smelled strange were poking at him. I was beside myself.
*side note-my poor wee one had his vitamin K shot after birth like most newborns, and his blood kept clotting, preventing the much needed useful sample. They wouldn’t let me nurse him due to the protein processing didorder he was suspected of having, and the baby was dehydrated, further complicating the blood draw.
Eventually when nothing was working and the baby was beside himself upset they let me nurse him and they ushered the three of us upstairs. They were admitting us. I was dazed and couldn’t process what was happening. The room we were placed in, unbeknownst to me at the time, would be our home for the next three days. We ended up in a room at the far end of the pediatrics oncology floor. There was an outbreak of whooping cough on the regular pediatrics floor so we were with all the poor babes dealing with cancer and getting chemo or radiation treatments.
*another side note-the cleanliness standards are higher around children who’s immune systems are supressed due to their treatments. We were still at danger of infection of whooping cough but not as much.
After we were we were admitted I was told I couldn’t breastfeed the baby until they got the test results back. I was offered a hospital grade pump for my comfort and we were left to our thoughts. My parents brought us clothes and stood by while we fought about staying in the hospital (my husband lacks some faith in the medical community and was convinced that there had been a mistake). This part of the story still tears at me because when we were facing our toughest challenge we were not a team. He left me and the baby at the hospital and went to go get some food. It took him 2 hours. I later found out he’d gone to his car and called 3 of his closest friends about our situation. We had only been married a few months and hadn’t had anything come close to this type of situation. It was tough. I as usual….called my one best friend to cry about it all with and then focused on the baby. He was to be put on pedialite for at least 24 hours until the specialist who was examining our test results got in touch with us. My milk had come in right after we were admitted. I disvovered that in the best way possible…a large downpour soaking all of my clothing. I requested the pump.
The first night was the worst. No one slept except the baby. I pumped and stored the milk, and walked the halls in between giving the baby pedialite and fitfully trying to sleep. The lab techs came in the next morning to draw his blood again and were able to get a small sample that they were going to have the results rushed on. We saw the admitting doctor, and spoke on the phone with the specialist in Seattle about the necessity of staying in the hospital. My husband was insistent that they had admitted us for no reason, the baby seemed fine. I was in a daze and had little to contribute. I’m sure that frustrated him but I didnt agree that the doctor’s didn’t know what they were doing. Everyone has their own experience with the medical profession and after three years of marriage I now understand where his lack of faith comes from. I digress…
The second day was a struggle. The previous blood sample clotted (big surprise there) before they could test it. They had to do two more to get the final results. I became aware of all of the crying sick children on our floor that day as well. All of the bald heads and sounds of pain coming from other rooms was too much. I cried a lot while pacing the halls. There was the nicest nurse who checked on me a lot and the mother of a little girl with leukemia that let me cry on her shoulder. I’ll never forget that. Here her daughter was stuck in the hospital for an undetermined amount of time fighting a life threatening illness, and she was comforting me. I was a wreck and could only imagine what on earth we were up against for the rest of Avery’s life. I imagined the worst.
By the third day I was a complete zombie. No shower, minimal food, very little sleep, and I was convinced by now that the doctors were crazy. My baby seemed heathy and looked perfect. My best friend stopped by to check on me and my family checked in every day. My husband was ready to pack up and discharge ourselves. I just kept thinking they’d take my baby away because it looked like child endangerment to not wait to see what the doctors found out. Our chosen pediatrician contacted us, and we scheduled a follow up with him as well as an appointment with an ear nose and throat specialist to snip my son’s tongue tie. This poor baby had a lot he went through in the first few weeks of his life.
It turned out to be a blessing that we saved my breastmilk. The biochemical geneticist from Seattle Children’s Hospital gave our nurses a low protein
formula for Avery and a specific recipe that involved a gram scale and breastmilk. Of course the formula was very expensive and the recipe hard to master but I didn’t care if meant we could go home. Thankfully we were able to be discharged from the hospital after being given our new feeding instructions and formula. I didn’t know at the time that this would only be the beginning of our medical journey.
The three doctors that got us through those early days were the Dr. assigned to us after Avery’s birth (because our chosen ped didn’t have hospital rights) our pediatrician that I chose before the baby was born, and the specialist that treats children with Avery’s same disorder in the hospital across the state from where we live. None of the doctors we talked to, except the specialist of course, had ever heard of Av’s disorder. All I knew about it to begin with I learned from Google. To this day Avery has yet to display a symptom of it unless we count his developmental delay. The specialist is unsure if his delay is related to his Methylmalonic Acidemia. In the first 3 months of his life we had 7 doctor’s appointments, numerous blood draws, and I learned how to give him shots of B12 in his tiny baby legs. I went back to work and started the shots all while my husband was gone to Colorado for a 6 week academy.
I love my baby. I wouldn’t trade him for anything. In amongst all of the unknown and hard things my baby did everything a normal baby would. He smiled at me for the first time. He learned to crawl, broke his first teeth, played, ate solids…he was still a normal child.
No amount of classes or books could have ever prepared me for Avery’s birth or the events after. When I started therapy and began to cope with my feelings about my new reality, as a mom of a child with a rare unheard of disorder, the one emotion I remember that helped me through it all was hope. There are no definites on this path we’re on. I just pray really hard and collect all of the great moments we have while we have them. I make a gratitude list almost daily of all of the blessings in my life. I kiss his little face every day and whisper in his ear a thousand times how much I love him.
My memories of having my first child will always include the beginning of his “treatment” if that’s what you could call it. It will always include memories of tears over the unknown and the loss of the sheer bliss that comes with being a first time mom. I will forever remember the gut wrenching fear that comes with a “sick” baby and a rare diagnosis.
When I hear stories of other children born with rare diseases or unusual disorders I just want to hug the parents. Being a parent is hard no matter the circumstances. I want to tell them it takes special parents to parent “special children”. I want to tell them to just do what they can to enjoy every moment of watching their sweet babe grow. Isn’t that what every parent does?