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 Everything was perfectly fine andAlejandra was the most gorgeous, precious baby girl in the world. Roughlyaround 3 months of age I noticed Alejandra’s head would just suddenly, out ofnowhere turn to the right and her body would jolt as if she was startled and shewould start crying. During a regular checkup with Alejandra’s pediatrician, webrought this activity up to her pediatrician and we were advised it might justbe a reflex and to continue to observe it. As the weeks passed, the “incidents”happened more frequently and for longer durations with more forceful turning ofher head and increased jolting of her body. Also, when it occurred her armswould reach out as her legs pulled up into her body. Alejandra’s dad alsostarted to notice that Alejandra’s eyes would roll upward to the right. Webecame very concerned and started to record the “incidents” on my Blackberry.  On April 11, 2011, I calledAlejandra’s pediatrician and voiced my concern about the increase in activityand tried to explain the movement. He stated it sounded like acid reflux (withher legs pulling up) and advised me to continue to monitor the activity. That samenight as Alejandra continued to endure the discomfort of these “incidents”,Raymon and I made a decision to take her into the ped’s office the next morningand show him the videos.  That next am, April 12th,Alejandra’s regular pediatrician was out of the office but another pediatricianoffered to assist and after watching the videos of the incidents, he advised usthat she was having petit mal seizures and she would need to see a pediatricneurologist. He stated that the dates when the pediatric neurologist came toour town (he traveled from Sioux Falls) was unknown at the time and his officewould contact us to set up an appointment once they had more information on thedates. He also advised us to take Alejandra to the emergency room if sheexperienced more than 8 seizures a day (she was experiencing approximately 6-8per day) or if we had any other concern. That night, Alejandra had a seizureunlike any of the others she experienced before. We were terrified andimmediately took her to the ER. During the visit, labs and x-rays werecompleted, but the results were normal. We were advised to follow up with Alejandra’spediatrician that next day. On April 13, 2011, Alejandra wasexamined by her regular pediatrician. He watched the videos of her seizures andstated she was having Infantile Spasms. He explained to us that it most likelymeant there was something going on with her CNS and there may be some sort ofbrain damage. He stated further testing needed to be done and scheduled anelectroencephalogram (EEG) for that following day.  The morning of April 14th,Alejandra’s EEG was completed. We were told to follow up with her pediatrician thatafternoon because he thought he would have the results back by then. Thatafternoon, although he didn’t have the EEG results, he scheduled Alejandra fora magnetic resonance image (MRI) that evening. We were told that after the MRIwas completed the on-call pediatrician would call us with a briefing of theresults. While Alejandra underwent her MRI, Raymon and I researched InfantileSpasms. We wanted to be prepared for whatever and have some sort of informationon what to expect. When we spoke to the on-call ped, he advised us that theresults were significantly abnormal and that’s all that he could tell us. Hetold us that a follow up appointment with Alejandra’s regular pediatrician wasscheduled for the next morning and we would receive further information duringthat time. We went home knowing there was something wrong with our baby butnothing more than that…it was a rough, sleepless night.  On Friday, April 15, 2011, Raymonand I met with Alejandra’s pediatrician for a complete report of the EEG andMRI results. He stated the results were substantially abnormal and thatAlejandra had a rare neurological condition known as Hydranencephaly. He statedhe believed she got it in-utero but couldn’t tell us how it occurred. Headvised us that she would be significantly disabled for the rest of her life IFshe lived to her 1st birthday, not developing any further than herage at the time (4 ½ months) and rely on us for all her needs. He told us therewas nothing to do to reverse the damage and the only treatment is supportivecare such as treating the seizures. He then prescribed her Keppra for herseizures. He wanted Alejandra to see a pediatric neurologist and stated wewould also benefit because we might get more information about her condition.He gave us the option of either waiting for the pediatric neurologist to comefrom Sioux Falls or traveling to either Denver, CO or Minneapolis, MN to seeone. As concerned parents, we wanted our baby to get the best care possible assoon as possible, so we chose to go to Minneapolis.  Alejandra was evaluated by apediatric neurologist at the University of Minnesota Children’s Hospital onApril 26, 2011. He was extremely helpful in answering questions (very direct)but he gave us little hope on her progress. Before he gave us any information,he asked what we were already told by her pediatrician back home. After tellinghim what we were already advised, he proceeded to give us his information. Hestated the injury to her brain is remarkably significant and there is so muchdamage done that she wouldn’t progress any farther than where she was at. Hethought she was blind because she wouldn’t follow objects he placed in her lineof vision (she was 4 ½ months, just now started Keppra and just about ready fora nap). When asked about experiencing pain from the seizures, he told us theywere not painful. But why would they make her cry and upset then? I asked himabout her benefiting from physical therapy, as he just told us she wouldn’twalk or possibly even crawl, he stated “he didn’t think she would”. He told usthat the best care she could get is what we have been providing her with thusfar and that’s what would help her to thrive in life.  Although our hearts were broken,we feared losing our baby, and were expecting the worse…we did just as herecommended. I immediately went home and conducted all the research I could onHydranencephaly. I found web pages and support groups (Brayden Alexander J)and sought all the information I could. When I thought Alejandra would benefitfrom something I pushed her pediatrician to prescribed it/refer her. At firsthe would say she would benefit from whatever I was asking for in the future,but I kept asking over and over. As a student nurse, I knew how important earlyintervention is and that’s my goal with Alejandra. After he realized I was notgiving up, he finally gave in. I got all the referrals I requested; visionevaluation, spasticity clinic, Baclofen prescription (which she benefitsgreatly = no more muscle spasms), therapy, etc.   Alejandra Rayna turned one year old onDecember 10, 2011. It was a very exciting and joyful celebration! Today, she isa very beautiful, happy and joyful baby girl. Her physical and mentaldevelopment is delayed by approximately five months but she continues toprogress further than expected by medical doctors. She still continues to haveseizures but not on a daily basis as they are controlled with Keppra. She willbe returning to the University of Minneapolis Children’s Hospital in May of2012 for follow up testing and evaluation with her pediatric neurologist. Atthat time, he will evaluate her condition and determine how she has progressedand developed.  She was recently evaluated by theShriners’ Hospital for Children - Twin Cities (referred to by Birth to 3) andeverything went exceptionally well! They assessed and evaluated Alejandra'scondition and provided us with great and very helpful information. The Orthopaedicordered a pelvic x-ray and we were advised that everything was developing as itshould and there was no concern with her bone growth. The Nurse practitionerstated that Alejandra is “doing great given her condition" and that she is"progressing remarkably". The Occupational and Physical therapistalso stated that Alejandra is doing well and that they could see she gets thetherapies/treatments she needs to reach her full potential on a daily basis.They advised us that Alejandra does have full range of motion and although sheexperiences some increased muscle tone (spasticity) it is not as severe asexpected to be with her condition. They asked about her therapy sessions andrecommended that she get more physical therapy every week, at least 2 sessionsper week (which she just started with Children’s Care on 1/11/12). The WomenAuxiliary of the Shiners’ provided Alejandra with an Otter bath chair when weexplained how much she loves taking bathes but how it is starting to becomemore difficult to bathe her as she is growing out of her infant bath chair.They also explained to us about the possible future use of a stander(Children’s Care tried this with her and she loved it), AFOs and wedges to helpwith her muscle strength and tone. They would like to see Alejandra every sixmonths in order to monitor her growth and development. We booked her nextappointment with the Shiners’ Children Orthopaedic Hospital to coincide withher neurologist appointment in May of 2012.   According to medical research,Alejandra should not be able to feel or express emotion, touch, see, hear,talk, crawl, walk, or anything that involves her being independent. We weretold that she would not know us or her surroundings. We are proud to announcethat Alejandra is and will continue to prove medical science wrong. She doesfeel and express emotion by crying when she is upset and smiling when she ishappy. She loves cooing, laughing, and cuddling. She recognizes familiar voicesand faces. Her favorite show is Barney and if she does not get to watch him atleast once a day, she gets bossy and throws a little fit but once his show ison she starts smiling and gets filled with joy. She loves bath time and ofcourse, has a collection of rubber ducks that she plays with. She enjoysplaying with light up and musical toys. She knows when she is not at home andgets fussy when she is ready to go home.  Waking up every morning to Alejandra’sbright and happy face is a true blessing. She has an amazing little personalityand can brighten anybody’s day with a smile. She is our Nina (little girl) andwe would not change one thing about her. To us, she is perfect!!  I always wanted to be a nurse and amcurrently working toward my RN. After my oldest daughter was born, I neverthought I would have any more children, and never did I think I would have a childwith special needs. And then God blessed me with a gift. That gift was aprecious little baby girl who would require constant and endless love, care,devotion, and a voice that would speak high, loud, and clear for her needs. Inmy heart I believe that my desire to become a nurse and being blessed withAlejandra was all part of God’s plan of life for both of us. She has taught methat life is very precious and sacred and it should not be taken for granted,that we should always love and cherish what we have, because life is uncertainand one day, it may all change. |
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I found out I was pregnant in Mayof 2010 after suffering a miscarriage earlier that February. We were very happyand grateful to be given an opportunity to bring new life into this world.Although there were no significant complications with the pregnancy, towardsthe end of term, I started having preterm contractions. It began the day afterHalloween, after a long evening of trick or treating. At first, my OB doccontributed it to the walking and I accepted it. But after it persisted foralmost a week, I decided to go into the ER to be re-evaluated. There theyrealized I was in preterm labor and dilating. They gave me some medication toprevent further dilation/contractions, kept me over night, and the next day Iwas sent home. Later that week, I noticed decreased fetal movement. I observedbaby’s movement throughout the day while at work and towards the end of the dayI called my OB because she wasn’t as active as usual. My OB advised me to comeinto the clinic the next am for a Biophysical profile. I completed a non-stresstest, some lab work, and had a 2D ultrasound. Everything checked out normal.