My name is Jasannys, I have a 5 year old boy named Joseph and 10 month old twins named Julius and Josiah. As a parent you never wish to hear something is wrong with your child especially when they were healthy throughout pregnancy. In 2017 I had my twins with one weighing 7lbs 10oz and the other weighing 7lbs 8oz. My fiancé and I had an idea we would be in for a lot caring for twins but we never expected one of them to have medical problems.
On the day I had the twins via cesarean we were able to give them a first feed as soon as we got into the recovery room. Julius took his first bottle fine but when Josiah began to take his feed his grandmother noticed he was turning purple. She urgently got the nurses attention and as the nurse tried to get Josiah to breathe it was recommended that the NICU team should further evaluate him. As the team evaluated Josiah they noticed three things 1: Josiah had an extra toe 2: Josiah had a sacral dimple (with no visible end) and 3: Josiah was working very hard to breathe. The NICU team wanted to keep a close eye on him so they took him upstairs to the NICU floor. We were told Josiah would be back down in a few hours but he ended up staying there for about 2 months.
The first week and a half Josiah had about 22 desaturations per day mainly with feeds. This means Josiah’s oxygen levels would drop while feeding. The NICU ran a bunch of studies because no one seemed to know what was going on. It was then that the nurses said there is seriously something wrong with Josiah, let’s get an ENT specialist (Ear, nose, and throat) involved. His ENT surgeon decided Josiah should have a barium swallow exam (a test to check difficulty/painful swallowing) done to see what was going on while he fed. The doctor found Josiah was aspirating while in a cradling position but didn’t aspirate while tilted toward the left side. On 3/9/2017 Josiah went into the OR with ENT to have a scope put down his throat to see if they could find something out of ordinary. My fiancé and I were told that if they did find a problem they would fix it. The ENT surgeon found a Laryngeal Cleft which is considered a rare abnormality that needed many stitches. If you don’t know what a Laryngeal cleft is think of a person with Cleft palette but instead of it being on the lip it is in the larynx (throat). On 4/6/2017 Josiah went back in to the OR because he was still having a little difficulty with feeding. He would cough and spit up while feeding which wasn’t supposed to happen. His ENT surgeon found that the deepest part of his cleft repaired better than expected but the upper portion split back open. Josiah had 2-3 more stitches in place and the NICU commenced bottle feedings about a week later. Feedings began at 15ml and increaed by 5 ml every day. Josiah seemed to be doing well so we were finally able to go home on 04/19/2017. Exactly one week later we were readmitted to the Children’s hospital in CNY, Josiah know caught the (RSV Infection) and was dehydrated. He was put on oxygen and we were able to go home in 4 days. This didn’t last long as Josiah was back to the Children’s hospital on 05/16/17. He was having difficulty breathing, we later found that Josiah aspirated once more but he had pneumonia this time because of it. Josiah was also still positive for the (RSV infection) which we were told was pretty common because it tests positive for a long period of time. During this hospital stay we also found an abnormal rhythm on Josiah’s heart and oxygen monitor. An echocardiogram showed that Josiah had ASD (atrial septal defect) or a hole in the heart and WPW (Wolff-Parkinson-White syndrome). ASD is very common, many people have it and are unaware of it. Normally, it will shrink in size or close completely on its own. Josiah’s however is bigger than the average and he continues to see a cardiologist to check up on it we know it can’t get bigger but if it doesn’t decrease in size it can be surgically closed if needed. Wolff-Parkinson-White Syndrome is a rare condition. With WPW, an extra electrical pathway links the upper chambers (atria) and lower chambers (ventricles) of the heart. In normal hearts, the only electrical connection between the atria and ventricles is through the AV node. The AV node helps control the heartbeat. In WPW, the extra electrical pathway is called a bypass tract because it bypasses the AV node. So the AV node cannot control the heartbeat, and so it beats very fast. We were told WPW is like a heart attack in an adult but in an infant theywould lay down with little to no activity, turn pale and if we tried to count his heartbeat we wouldn’t be able to. We also found that Josiah was still having problems with his feeds and he was continuing to aspirate (getting milk and secretions into the lungs). On 5/22/17 Josiah went into the OR again to see if something was wrong with the cleft repair because it was believed he was aspirating through the cleft. The cleft was sealed completely but his ENT surgeons decided to tighten it up to be 100% sure. A speech therapist then decided to perform another barium swallow but with different milk consistencies. The speech therapist also believed Josiah was aspirating through the cleft he had but the results showed Josiah aspirated before the cleft. We found Josiah had a swallowing delay. Could this be a neurological problem or does he need extra time to learn how to swallow everyone thought? At this point it was ruled unsafe for Josiah to eat by mouth and because he still needed the proper nutrition to grow it was decided Josiah needed a G-tube. And he was now NPO (no food by mouth). On 6/2/2017 Josiah went back into the OR for the fourth time to have the G-tube placed. Josiah was handling every feed well and we were told he should gain weight quickly. We were then able to go home a few days later.
We were out of the hospital for about 2 months but on 8/11/17 Josiah threw up most of his feed at home. He had his eyes shut tight, he turned very pale and was grunting as if he were in pain. I thought it was WPW kicking in so I rushed him to the hospital only to find, he aspirated and had pneumonia in both lungs. This was the scariest moment of my life and my 5 year old kept crying saying he didn’t want Josiah to die and it has changed our lives ever since. We never keep our eyes off Josiah now and he his constantly near someone at all times. Josiah ended up getting better a few days later and we were able to go home just in time to celebrate his brothers 5th birthday. Unfortunately Josiah didn’t gain weight quick enough which has become a great concern. Currently he is 10 months old only weighing 14lbs while his twin weighs 21lbs. We weren’t sure why he wasn’t gaining the proper weight, was it because of the 2 heart defects or was it something else? we still don't know.
This is when our pediatrician decided it was time to get answers elsewhere because we weren’t getting them locally. Our doctor mentioned possibly seeing an Aerodigestive team in Boston, which consist of pulmonary, ENT and gastroenterology doctors that work together. Unfortunately our insurance denied us going there so our next stop was going to New York City. On 10/27/2017 we traveled to NYC to the Children's hospital of Montefiore and we met with the aerodigestive team there. Josiah had an endoscopy (a flexible tube with a light and camera attached to it) put down his throat and we found that Josiah was still struggling to swallow properly. We were told we should come back to put Josiah back in the OR but this time to have a triple scope put down his throat to see if they can find any other problem that could cause his struggle with feeding. We are going back in January to have this done. After our visit in NYC we received a phone call from Boston Children’s hospital stating that a doctor is willing to see us for one free visit to hear Josiah’s story and evaluate him. We are very thankful for this because we feel it doesn’t hurt to hear other doctor’s opinions. And just maybe they can come up with something no other doctor has.
Besides Josiah’s feeding difficulties and heart defects. Josiah has a six toe that has extra bone off to the side of it and he also has a sacral dimple with no end. On a sonogram and MRI of the sacral dimple an attachment of skin was found to be touching Josiah’s tailbone. Causing Josiah discomfort in many positions and to this day he still lays as if he were in the womb. His legs are always curled up to his body and are rarely ever extended. Josiah may have to get surgery to remove the sixth toe and sacral dimple attachment this year but we are unsure when. We also know Josiah has a syndrome with all his current problems but his first genetics test which tests if Josiah is missing any chromosome from his DNA came back negative. We are still further investigating what syndrome he may have. His growth is very slow and he is developmentally delayed per his therapists and doctors. Josiah can't bare any weight on his legs if we try to stand him up his legs collapse he has no strength in them. Josiah can grab objects with his hands but he cannot push off any object with his arms. Josiah’s daily life is never known completely, some days he wakes up with the biggest smile and other days you can tell he is in pain and is not feeling well. Josiah still coughs a lot of mucus up every day and you can tell it wears him down. We don’t know how he will be in the future or if he will ever have a "normal" life as any other child but we will do whatever it takes to make sure he is happy and in the best health possible.
Josiah’s worst case scenarios are the following if we can’t get answers:
Having his own Syndrome
Not being able to eat by mouth for the rest of his life
Having difficulty walking
Josiah’s treatment so far consistent of constant doctor’s visits. He sees 11 specialists locally not including home visits from therapists, general teacher and VNA nurse but also traveling to NYC and Boston to see doctors there. Josiah has to eat every 3 hours in a 30-40 degree angle and rest for 30 minutes before laying down to prevent reflux. Josiah’s feeds take an hour to complete and he has 8 feeds in total throughout a 24 hour span. He also requires a suction machine because he coughs a lot of mucus up and that is something we can never leave the house without. He receives respiratory treatments daily along with Chest PT and reflux medicine daily.
The money would help with Josiah’s medical trips to NYC and Boston and his medical equipment. Josiah currently has a slide glider swing that can recline to sit him in an elevated 30 degree angle while feeding but he becomes very uncomfortable in it as he has to sit in there most of the day. Also, with his feeds increasing he is not elevated enough to prevent reflux. It was recommended we try to get to a crib that can recline to his needs and to give him more comfort. Like the cribs in the hospitals that can recline. This crib is very expensive and the trips are pretty expensive also because we don't have a definitive answer as to how long we will be in staying depending on what they find in the OR. I do work full-time to pay for bills and medical needs but it is very hard and my fiancé and I could use any help we can get. Every penny will be for Josiah’s care if you can’t donate another thing that could help is a prayer for him. He has received many prayers and he has fought through every obstacle. I can never express how much I appreciate them. Any donation would be greatly appreciated.
God bless you and thank you for reading Josiah’s story.
- Alicia Clark
- Yajaira Rivera
- Jamie Bowers
- Alicia Clark
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