FOREVER LOVED SESSION- Please read, share and pray for this sweet family. Grab your tissues, you are going to need it for this one. I would like you to meet the Hodis family. Mr and Mrs with twins Zachary and Benjamin. Our superstar this morning would be precious Benjamin. Kristin pregnant with twins at 29 years old. It was an absolute dream come true considering there was no family history of twins in her or her husband’s family. This was going to be the couple’s first child and then to find out they were having twins, the two were overjoyed. Everything about Kristin’s pregnancy was perfect. There were never any red flags to show concern for the couple. On June 27th, 2014 Kristin delivered at Rancho Community Hospital in Murrieta California. Her water broke at 36 weeks and the boys were delivered vaginally in just 46 minutes. Both had good vitals but were sent to Radys NICU in Escondido California for monitoring. Monitoring twins is very standard practice. Zachary had to be monitored because he wasn’t latching well and wouldnt eat. Benjamin had to be intubated for help with breathing and had a poor latching as well. Kristin spent the night alone in the hospital because her husband went with the babies to Radys. Kristin expressed her concerns to her Doctor and, like any mother, wanted to go see her children. She was released from the Hospital that following morning. After a few days, Zachary started to improve as he was more alert and more interested in eating. Benjamin, on the other hand, was breathing on his own but would just sleep and had no interest in waking up. Could this just be a total dream newborn?! Both of the boys had cat scans which came back completely normal. Doctors said since they were premature, this kind of behavior was typical and more time was needed. Zachary was released 1 week after birth. After 1 week, with no real improvement in Benjamin, Doctors started talking about how stiff and tight he was. This is a condition known as Hypertonia. They sent Benjamin to Rady’s Children’s Hospital, San Diego for an MRI. Unfortunately, those results came back abnormal. The neurologist could not meet with the family to tell them anything until the next day. The family still had no idea as to the reasoning behind that but they were left to worry for the next 24 hours. The doctor said that Benjamin had an under developed cerebellum and brain stem pons and gave many scenarios of what could happen to him in the future including early childhood death. Early childhood death? Did the doctor really just use that term with this new baby boy? How could this even be? Based on the fact Benjamin was not eating, at 2 weeks old a gtube was placed in his stomach. Although Kristin was not comfortable with that at the time, she was willing to do anything to keep her son healthy. Many, many tests were done and all his newborn genetic testing came back normal, chromosome testing was all normal. Confusion and frustration set in. After 1 month in the NICU, Benjamin was ready to come home. A nurse met Kristin and her husband at home to teach them how to work the pump that would be feeding their son. This would be a new transition for their family but they truly believed everything was going to be just fine and that this was only temporary. Over night Kristin and (husband’s name) became instant full time nurses to their special needs little boy and lets not forget their typical little guy Zachary. The new lifestyle was overwhelming yet it slowly just became second nature. The first two months were not very eventful for Benny. He did not really meet any standard milestones and sleep all the time, much more then his twin brother. At 3 months he started becoming more aware and waking up throughout the day but was very uncomfortable. He would cry all the time and everyone could tell he was in pain. At 8 months they went in for an EEG to check for seizures. They never saw any seizures but the report showed major seizure activity. How could this be? They also did another MRI and that is the first time they heard the awful words of Pontocerebellar Hypoplasia. They were told to follow up with genetic testing. After 2 months of waiting for results they got confirmation that Benny had PCH type 2, a genetic disorder. PCH is a very rare, inherited progressive neurodegenerative disorder characterized by prenatal development of an abnormally small cerebellum and brain stem pons. Patients have severe cognitive and motor handicaps and seizures are often reported. Treatment is only symptomatic and prognosis is poor, as most patients pass away during infancy or childhood. Kristin and her husband are not naive to the condition of their son. They understand there will come a day in the next few years where he is no longer here with us all. Although that situation alone is extremely terrifying they do everything possible to create memories on a daily basis. Benjamins first smiled at 1 year old and gratefully I was able to see that smile as well. He will never walk, talk, eat or giggle with his family. He will never throw a ball or even fight with his brother. Kristine told me, “even though we have to be so careful with exposing benny to germs we feel the need to get him out and explore the world which is what we try to do my hope is that one day when it is his time we will all be at home surrounded by love and he will peacefully go up to play in heaven and no longer be a prisoner of his own body.” There is an extreme lack of funding for this condition because it is so rare. Both parents have to be carriers of this gene mutation to pass it along to a child. With only .03 of the population being a carrier it is very rare for 2 carriers to come together. This is not tested in your average panel of prenatal screening so before you become pregnant there is no way of knowing or preventing this. Parents who together carry the gene have a 25% of passing it to their child. My goal of this session was to give this family something to hold on to during the tough times. When they are sad or questions life they can see these images of their son and continue to fight for the life he deserves. Zachary loves his brother. They are best friends and inseparable. He see’s no difference in his condition, and I have been told that know one can make sweet Benny smile like this twin can. Please keep this family in your thoughts today. Dealing with the fact your child is sick is one thing but being given a diagnosis that provides no hope for your child’s future is another. My heart aches for this couple and I was blessed to be apart of their journey. Let’s raise awareness and encourage a more in depth screening for pregnancies. This was their first family photoshoot and I am grateful to be a small part of it!! -Lindsey I cannot do these sessions without all of you. Our campaign ends tomorrow at 6pm!! BUY PURCHASING A SHIRT YOU ARE PROVIDING FAMILIES THE OPPORTUNITY TO HAVE A FREE LOVED AND LOST SESSION. OUR GOAL IS TO FUND 125 FREE SESSIONS AND WE ARE SO CLOSE!! We have 300 shirts to sell by tomorrow at 6pm!! The link to watch the video is-youtu.be/0hnmJ2LZnYk (if the video doesnt open on the facebook app go to your browser.) click here to buy the t-shirt, tank top, hoodie: https://represent/team-love-song PLEASE WATCH AND BUY A SHIRT NOW IF YOU HAVENT YET ALREADY!! Like Love Song Events & Photography to follow up with this sweet client and many other clients of mine who wish to share their journeys with you. lovesongphotography - Southern California Photographer
Posted on: Thu, 20 Nov 2014 17:22:40 +0000
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