Brooklyn-6 months (In Loving Memory)
Brooklyn was born with an abnormal brain, most likely from a genetic disorder that is currently undiagnosed. She is missing her corpus callosum, which is the tissue that divides the two halves of the brain. She has simplified gyral patterns meaning that she doesn’t have as many of the folds in her brain as a normal person would. She also has several places where grey brain matter is present where white brain matter should be. Because of these brain abnormalities she currently has delayed development, low muscle tone, seizures, hypopituitarism, and trouble swallowing. She is currently being fed through an NG tube that goes down her nose to her stomach. We are currently unsure about her eyesight. She has all the correct anatomy to be able to see, although she is extremely farsighted, the question is whether the connectivity between the brain and her eyes is there.
We had no idea while I was pregnant that there were any issues with the baby, we were fortunate that the doctors discovered her brain abnormalities a few days after she was born. She spent a month in the NICU at Primary Children’s Medical Center in Salt Lake City UT, undergoing a lot of testing to try and figure out what caused her abnormal brain development. They did a Microarray and Chromosome testing to narrow down a specific syndrome, however, these tests came back normal, adding more questions to the situation. She had a CT scan and MRI, which revealed the abnormalities in her brain and they also tested the chemical composition of her brain, which also came back normal. Without a specific diagnosis the doctors decided to test what felt like everything in order to give them more clues. Brooklyn had an Echocardiogram, a Renal Ultrasound, several Swallow Studies, an Upper GI, and an EEG. It felt like everyday I went to the hospital they were doing a new test to help with a diagnosis, always giving me hope that we would have answers and no definite answers ever came, except that all of her vital organs were functioning just like they were supposed to.
When Brooklyn was released from Primary Children’s Medical Center, we didn’t have a diagnosis as to why this had happened, but they had given a list of things that often happen with her symptoms and things that we should look for. When she came home, she wasn’t on any medication, and she was eating from a bottle. It wasn’t until 3 months later that she began to have seizures and was then admitted to Utah Valley Regional Medical Center in Provo UT, when she started to have seizures back to back. When she was admitted to the hospital we were told it should only be an overnight stay, however, while she was there the doctors discovered that she also had a urinary tract infection, and her blood sugar kept dropping dangerously low. She then had lots of blood work and her blood sugar had to be tested every 2 hours. Her poor feet looked so sad because of how many times she had been poked. Our overnight stay turned into 10 days in the hospital. After lots of blood work, consults with several different specialists, and an EEG; Brooklyn was sent home on 5 medications and was being fed through an NG tube.
Brooklyn has had other tests since being released from the hospital including a VCUG, several blood panels, and a swallow study. The doctors would also like to do additional genetic testing, looking within specific chromosomes for gene mutation since all of the initial genetics tests didn’t reveal a specific diagnosis. From my understanding these tests require isolating a small part of the thousands of genes within a specific chromosome, and each test will cost me thousands of dollars and there is no guarantee that they are even looking in the right place. If not, then they start over with a different set of genes costing even more money. We are currently trying to get authorization from our insurance company and then we will find out exactly how much it is going to cost us out of pocket. While I would love a name to put with Brooklyn’s disorder, there is only so much that we can afford to do, especially considering all the money that we are paying for her treatments that she is currently getting for symptoms.
Brooklyn is currently being followed by seven doctors including her pediatrician, a neurologist, an endocrinologist, a gastroenterologist, an ophthalmologist, a geneticist, and an ENT. She also works with a speech pathologist, an occupational therapist, a developmental specialist, and she is in vision support services. She is currently on three different seizures medications, reflux medication, a steroid and growth hormone, which is an injection that I have to give her everyday. We are in the process of switching her from NG feeding tube to a G-tube, which is a tube that is on the outside of her belly and is attached directly to her stomach. This does however require a minor surgery, but will hopefully help increase her quality of life.
Brooklyn is working with the a speech pathologist and occupational therapist in order to help her with her increase her muscle tone, improve her feeding process, and introduce fine motor skills. Brooklyn can move her arms and legs, however, she cannot hold her head up and doesn’t hold her hands mid-line which is important for a lot of developmental processes. We are working with her vision to teach her to focus and track an object and we may be trying glasses to see with that would help her focus more easily.
Having Brooklyn is such a blessing and truly is as a friend described it a “hard privilege”. She means so much to our family, but she has created a lot of challenges that we are learning to overcome. Brooklyn has forced me to learn how to give injections, put down feeding tubes, watch and comfort her through seizures, keep track of medicines, and be patient through feedings. I have learned to ask a lot of questions, do a lot of research, and I have learned that a lot of times doctors just don’t know. Brooklyn is the youngest of four children and she is a big responsibility, however, I also have to make sure that my other children get the attention that they need as well. I think that balance of this has been one of the biggest challenges of having Brooklyn.
Taking any baby places requires a lot of stuff, diapers, wipes, binkies, change of clothes, baby food, toys, car seat, stroller, blankets….then you add on medicine, a feeding pump, and at times oxygen and the task of going out becomes kind of daunting. However, you have to go out. Brooklyn averages 1-2 doctor appointments a week, some of which require an hour drive there and an hour drive home. The expense of having a special needs child is what causes me the most headaches. We have applied for several assistance programs and so far have been denied for everything that we have applied for. I have spent hours putting together information about Brooklyn, our income and resources, assets, basically our entire lives. Generally someone looks over our case for about 20 minutes and we are denied before they even look at information regarding Brooklyn’s needs.
While our day to day life is very busy, keeping track of meds, making sure they are given at the correct times, keeping doctors appointments, and also trying to work with her physically and trying to interest her in anything that would be an age appropriate development, it’s managing my expectations for the future that can stress me out the most. I want to be able to do as much as I can for this sweet girl, giving her the opportunity to grow and learn as much as she can, but at the same time it can be frustrating to think that I am putting in all this time for something that just may not happen. She is still so young so we have a lot of time to teach her things, but sometimes the unknown can be heartbreaking. I would love for her to be able to sit up, talk, walk, play, and interact, but the unknown diagnosis really doesn’t give me any clue to know if that is even possible for her. Honestly I really just hope that she feels loved and that my family will use her special needs as a positive part of our lives. I have to remind myself sometimes that although I am constantly caring for Brooklyn, she isn’t just a problem to be fixed. She is still a baby that needs to be played with, sung to, enjoyed and loved.
Brooklyn is an unbelievably sweet little baby. She will let you know when she is unhappy about something, but it is with the sweetest, quietest cry. From day one of her life, she has been a fighter and her will to live astounds me. She works through so many obstacles in her little body, but she seems to surprise doctors and nurses with her improvement all the time, a trait that I love! I truly believe that given the opportunity she will surprise even me in her growth and development. Brooklyn doesn’t focus on my very often and doesn’t show a lot of emotion, but every so often she will give me a glimpse of a little smirk and it makes my whole day.