I'm part of the Family Advisory Board at Maimonides Medical Center. The board is aimed at promoting family centered care, improving the quality of health care for children and families, help develop programs and policies, and to help plan and design new spaces. As part of the board we were asked to present at grand rounds for hospital staff (residents, fellows, doctors, nurses, etc...). This particular presentation is to help these medical professionals better serve their patients and families and give as much of an understanding as we can to what our everyday life consists of. So here is what my presentation looks like. I also made a video and if I can download it I will, I'm having computer issues these days...
A Day in the Life of Samuel Leshin
It's very difficult to raise a child with physical disabilities, it's just as difficult to raise a child with severe medical issues, but to raise a child with both is a downright living hell. When you get pregnant and are expecting one of the most wonderful experiences of your life to come upon you, one may think and fantasize will my child be a doctor, a lawyer, the president of the United States. One never thinks will my child walk, talk, eat by mouth.
My name is Carrie Leshin. I am a speech-language pathologist that specializes in feeding and swallowing disorders. I worked at Beth Israel Medical Center in NYC for almost 4 years. There I had extensive experience working with dysphagia of all kinds. Never in my life would I have thought that I would have a child who was born without the ability to swallow.
Towards the very end of my pregnancy I was diagnosed with severe polyhydromnios. When I received this diagnosis I was petrified that the cause was possibly neurological. I prayed for my baby to have a cleft palate, TE fistula, an esophageal atresia… anything but a neurological issue. As soon as my son was born and was put on my chest I knew something was wrong. I asked the doctors while they examined him if there was anything that was wrong. The only thing they noticed and this included the pediatrician and neo-natologist was that Sam's neck was a little floppy and that his left arm did not move as vigorously as his right. Once they put Sam on my chest I noticed immediately how wet and gurgly his vocal quality was as well as his raspy cry. The next thing I noticed was that only the right side of his face moved when he cried and that when I tried to produce a root reflex on both the left and right side of his face I got nothing. I kept saying to all of the doctors and nurses that Sam was not swallowing and part of his face isn't moving. The thing that scared me the most was the wetness of his vocal quality. I kept thinking that he sounded as if he was drowning on his own secretions. When I said this to the doctors and nurses in the recovery room they didn't believe me and told me I was just being paranoid and post partum. Ok let's take a step back for a second and put the logical facts on the table:
1. Mom history of severe polyhydromnios greater than 97%.
2. Baby born with floppy neck, wet gurgly vocal quality, raspy cry, left sided facial paralysis, weakness on the left side of the body and no rooting reflex.
3. Mom SLP with extensive hospital experience in both pediatric and adult dysphagia is absolutely sure that this child is not swallowing.
Now I am being told that I am crazy, but I think this just screams incompetence don't you. Needless to say they sent Sam with me into the maternity unit. Sam was born at 11am and he was not taken to the NICU until 5pm. The only reason why they took him was because I kept insisting that they do and it wasn't until I cursed the pediatrician off and threatened to sue the hospital if my son ended up with an aspiration pneumonia that he was then taken to the NICU. Once in the NICU I was told to leave so that they can evaluate my baby. I told them no and I wanted to know what they were going to do. They wanted to try and feed him. I said absolutely not he will drown he cannot swallow. They did it anyway and that night Sam developed aspiration pneumonia and ended up on C-pap along with all of the other terrible interventions that needed to take place. So in addition to the initial shock of having every single solitary hope and dream fall apart in front of my face, being post partum, healing from a vaginal delivery, I now have to deal with a hospital staff that is totally incompetent.
While at St. Lukes Roosevelt we had no idea what was going on. I was in shock, I was depressed, I was confused and worst of all no one else in the hospital knew what to do or tell me. There was no plan. Finally, approximately 10 days later it was determined that my son needed a gastronomy tube with a nissen fundoplication. Being an SLP and not having all of the facts of what was going on with Sam in terms of a diagnosis I was really against the fundo. I knew he needed a g-tube but I was really scared about the fundo. The NICU docs scheduled Sam for a fundo with their house surgeon for the following morning. The reason why they wanted to do this so quickly was because the surgeon was going away on vacation and he wouldn't be back for 2 weeks. So of course before my husband or I could make any decision we wanted to talk to the surgeon about the surgery and what this meant when we went home etc… The surgeon refused to speak to us until an hour before the surgery was scheduled which was 6:30 am the following morning. At this point I said adios, you will not touch my child we're going to Columbia.
Two days later we were transferred to Morgan Stanley Children's Hospital. There we basically had a million dollar work-up done on Sam which included MRIs, genetic studies, metabolic work-ups etc… It was here that it was concluded that Sam must have stroked in utero but of course not without drama. I can remember like it was yesterday being called into a conference room with a team of doctors, fellows and residents to discuss the findings on the MRI. It was me and my dad and all of these medical professionals getting ready to talk to me about the fate of my child. In short the neurologist said that Sam had bilateral lesions along his brainstem which may be indicative of Leigh's disease. Leigh's disease is a terrible regressive mitochondrial disorder where the prognosis is death by age 3. I was mortified, sick, and suicidal. My entire life ended in that room and all the while these residents and fellows sat there staring at me while they drank their coffee and ate their snacks.
Thankfully that diagnosis was wrong and now we were faced with the now what phase. Since no one really knew of a prognosis we all decided that it would be best to give Sam a g-j tube versus a g-tube with nissen fundoplication. The Columbia surgeons refused to do this so we had to transfer Sam yet again to another NICU and this time we went to NYU. Shortly after Sam's surgery was finished we were able to take him home with 12 hour nighttime nurse duty. We were home for about 10 hours and then back in the hospital but this time taken to Maimonides. Looking back I realize that I was not ready to take Sam home. I was not properly trained nor informed on all of the trials and tribulations of g-j tube feedings. In addition the nurse that they sent us was completely incompetent and knew nothing.
Thankfully at Maimonides the ER doctor was smart enough to admit Sam to the PICU in order for me to be better prepared to take him home. Unfortunately he contracted RSV while there and we were in the hospital for another 10 days.
Now almost 3 years later we still have to bare the heartache and reality of what all of the previous information actually means to our everyday life.
Sam now gets almost 24 hour nursing and approximately 25 hours of therapy a week through early intervention. He has to endure daily medical treatments in order for him to stay healthy. This is what one day in our house looks like on a good day.
5:00 am - prevacid
5:30 am- 1st feeding of similac 160 mls/ ½ hr.
6:15 - Sam wakes up
6:30 - nebulizer treatments (entire regimen last for 40 minutes if Sam cooperates)
• Xoponex & atrovent mixed
• The vest for 20 minutes
• Cough assist
7:00- 7:30am - Occupational Therapy
7:45 - 2nd feeding
7:30 - 8:30am - Special Instruction
9ish am - Nap (usually lasts 45 min)
10:00 am - 3rd feeding
12:15 pm - 4th feeding
12:00 - 1:00 pm - Speech therapy
2:00 - 3:00pm - Physical therapy
3:00 pm - 5th feeding
5:15 pm - 6th feeding
6 pm - nebulizer treatments (entire regimen last for 40 minutes if Sam cooperates)
• Xoponex & atrovent mixed
• The vest for 20 minutes
• Cough assist
7:00 pm - Bath
7:00 pm - Prevacid
7:30pm - 7th feeding
8:00 pm ish - Bedtime
This is a normal day in our home. It is very rare that the day goes this smoothly as I am at the mercy of several different doctor's appointments every month, nursing call-outs/ cancellations, therapy cancellations and changes, schedule changes to feedings because of illness or tolerance issues or because the therapists come late or re-schedule, insurance mess ups, surgeries and all of the other emergencies that can pop up at any moment on any given day. I have been to the ER with Sam 3 times already this year. Every single solitary day I wake up to having to run a marathon. Every single solitary day I wake up with a pit in my stomach, a constant stabbing, at the amount of stuff we have to do to just give my son the best possible chance that life has to offer him. I love my son very much, but if I knew that this would be my life before I chose to have kids I would not have done it. I wouldn’t wish this existence on anyone and my experience is cake compared to some of the other stories you are going to hear today.
Scott wrote this part...
Movie stars and athletes constantly tell their fans that they are not role models, but they are and if they don't like the pressure that comes with it than they should reconsider. This is analogous to you who are not only medical doctors but psychologists. When helping a child with severe disabilities you are not only helping the child but also helping the parents deal with the overwhelming feeling of loss and helplessness that comes along with raising that child. So when you write a script and send the family on their way, look that mother or father in the eye and ask if there is anything else you can do, any questions you can answer and any glimmer of hope you can provide.