Living With 5Pminus
It was a particularly hectic time in my life – the week before Pesach, and my oldest son was engaged to be married right after Shavuos. He had just come home from yeshiva in Eretz Yisroel. With a full-time job, I was racing against the clock to have my Pesach ready. I was due to give birth shortly and I was not planning to farm out my little children for such a beautiful Yom Tov. Child #8 was born on a nice spring day, ,? ???? and he was the 4th son in a row. After achieving an Apgar score of 9 and seemingly healthy, my husband and I gratefully discussed potential names and almost immediately I exclaimed like our mother Leah upon the birth of her 4th son: “הפעם אודה את ד!” We had an esteemed great-grandfather Yehuda, and the choice was made. It was 24 hours later, after several unsuccessful feeding attempts, that our precious newborn landed in the NICU (neo-natal intensive care unit). It appeared there was an obstruction and further testing was needed. Several hours later at a doctors’ consultation, genetic testing was recommended. I could not fathom why it was necessary to conduct testing on my perfect-looking infant, but the trained NICU staff pointed out some minor anomalies that were of concern. To me, it all sounded like they were digging up non-existing matters! It was a week later, on Chol Hamoed Pesach, when a team of serious-looking geneticists summoned my husband and myself to a meeting which I’ll never forget. They pronounced that testing results confirmed a rare and strange-sounding (to my ears!) diagnosis of 5Pminus which means a deletion of a group of genes residing on the short arm of one of the baby’s 5th chromosomes. The team continued with explanations that sounded like gibberish to me and at that point I announced that he is our child, and we will accept him in any form God created him!
This strength was bequeathed to me by my dear mother, who some 40 years earlier at the young age of 25, trailblazed acceptance and love for my beloved older sister, Sheindle, who was born with Down syndrome.
Little did I know that both medically and behaviorally Yehuda’s will be a much more severe challenge. After another week in the NICU, he was released on Isru Chag at exactly 2 weeks of age with clearance for a bris and without him having any major medical procedures. We scheduled a bris immediately, and in retrospect, it was a miracle; it was done right away, before his upcoming 4-month hospitalization. A calm 2-week period ensued when the baby learned to nurse successfully and for which I am forever grateful to have had an ensuing 2-year nursing experience with him, just like with my other babies. At 4 weeks he suddenly started to vomit bile and I immediately ran to the pediatrician, who promptly sent me to the ER. After extensive testing, it appeared that the initial intestinal obstruction that was present when he was born became complete and he was now totally obstructed. Yehuda needed emergency surgery which was somewhat exploratory, as it was unknown where and how much of his intestines were affected. The surgery was scheduled for a day before Lag B’omer, the same day my husband was to fly to Israel to cut my 3-year-old Shimon’s hair! My husband was about to cancel his flight, but I objected and willed him to go and be mispallel for our infant, whose future was uncharted territory. B’H the surgery was successful, and his intestines are perfect to this day.
That night as I came home to an empty house, I took the opportunity to google information on 5PMinus and what I found was not pretty. I cried copious tears through the night and at dawn resolved never to search for information on this syndrome again (which is a spectrum). I undertook to raise him day by day and enjoy his strengths rather than focus on his deficiencies.
After finally being discharged from the hospital, it was time to focus on my son’s wedding, which was imminent and the first in our family! The wedding was beautiful and as soon as we finished Sheva Brochos I was on the lookout for a qualified ENT; I noticed my infant turning purple quite often while crying. Before I even had a chance to schedule an appointment, Yehuda was rushed into the hospital for respiratory distress. At the hospital, he was promptly intubated and sedated. This was the start of a very harrowing hospital stay where the medical staff was ineffective and did not offer any meaningful solutions to extubate him successfully after recovering from Parainfluenza virus which had initially caused the respiratory distress. The only option they offered was a tracheotomy. There was no teamwork, and I was never offered a consultation with a specialist such as an ENT. It did not make sense to my simple mind that an infant who was breathing independently for 10 weeks needed such a drastic solution as a trach. When I consulted with the renowned Mrs. Shevy Kahan of Chaim Medical Resource, her advice was to attempt a transfer to Cincinnati Children’s Hospital where Dr. Mike Rutter, a world-renowned otolaryngologist practices. She told me that only if Dr. Rutter tells you that your son needs a trach should you agree. At that point I was so ignorant in medical nuances that I asked Shevy if she really meant the Cleveland Clinic, which I had heard of and was also in the state of Ohio! B’H Dr. Rutter accepted Yehuda and was willing to evaluate him for alternative solutions. I will not elaborate on the 3-week long struggle to get Yehuda out of the local hospital. Suffice it to say that I refer to climbing Mt. Everest as an easier task than this accomplishment. We got insurance approvals easily and everything was okay at the accepting hospital, but the NYC hospital just would not let him out! All that time he was still on the respirator and his condition deteriorated from the lengthy ventilator hook up. B’H after my refusal to allow even the most minor medical interventions such as X-rays they finally released him.
Yehuda was transferred to a portable ventilator and other medical hook-ups by a skilled air ambulance medical team, and off we went to a private small air ambulance and finally flew to Cincinnati. I’ll never forget when Isaac Lieder of Vital One, a true gomel chessed, met me at Teterboro airport with a supply of delicious sandwiches that lasted several days until I could arrange kosher food shipments to remote Cincinnati. Our 9-weeks stay at Cincinnati Children’s Hospital was eased by the wonderful hospital staff and the unbelievable devotion and care by the famous Dr. Mike Rutter, who performed 2 surgeries and successfully extubated and stabilized Yehuda.
After a 4-month continuous stay, spanning 2 hospitals, we B’H finally flew home with our baby on Erev Succos and arrived home 2 hours before the zman with a paraphernalia of medical equipment. My bedroom turned into a mini-hospital, and we had to learn how to monitor his oxygen saturation and supplement with oxygen via a nasal cannula as needed. At first, Yehuda’s medical condition was very precarious, and we frequently flew back to Cincinnati for check ups and a procedure called balloon dilation, where his small and compromised airway was slowly expanded. I didn’t dare to take any of his medical care locally for fear of incompetence which could result in a recurrent intubation. I wanted to avoid that at all costs. As a result of being such a frequent visitor to CCHMC, I cultivated a very good relationship with Dr. Rutter and have referred several patients to him whom he has successfully helped. I must point out that in addition to being such a highly skilled doctor, Dr. Rutter has an exceptional nice character and goes out of his way to help his patients. Over the years, I have also accumulated a lot of knowledge about arrangements that need to be ironed out when traveling so far for medical treatment. I am happy to help and share details with families visiting Cincinnati Children’s Hospital.
For the first 2.5 years of Yehuda’s life, caring for his constant medical needs was a demanding challenge. Sometimes I was literally awake many nights in a row just to help him breathe and ensure he is well oxygenated. There were nights when the monitor kept on beeping, and it was impossible to sleep. The whole family pitched in, and my husband and oldest daughter Goldy took shifts as well. Somehow, the nursing aid I had applied for never materialized until Yehuda didn’t need the nursing care anymore B’H. I remember telling my OB doctor when he ordered me to report to the hospital for an induction of labor with my-now-2-year-old daughter that I won’t be going because Yehuda is burning with fever, and I must care for him and help him breathe! My always-sensitive daughter, Goldy, sized up the situation and very maturely told me she will care for him as best as possible! With Hashem’s help as the days passed and Yehuda grew, his medical deficiencies stabilized substantially.
Yehuda is 5 years old now and our main challenge shifted from medical issues to behavioral challenges. Yehuda has unending energy with a very short attention span and can tear the house apart in 5 minutes. He needs constant supervision and care. Notwithstanding his cognitive and developmental deficiencies, he is very cute and endearing. Yehuda loves his family, parents and siblings and will hug and kiss us frequently. He dislikes strangers and it takes a while for anyone besides his family to win him over. Despite all the messes he creates, Yehuda’s siblings love him dearly. They will play with him, take him outside for rides on his bike and are very devoted to him. I think my children are really growing in sensitivity and kindness because of their exposure to his various needs and differences. B’H one of my daughters got married this past Lag B’omer and I sent Yehuda away for 6 days to a very special family, along with my 2-year-old daughter. My 10-year-old son commented that he misses Yehuda more than he misses my cute darling 2-year-old princess! His comment was priceless to me, and this is what keeps me going.
Yehuda is an enormous challenge and keeps me busy 24/7, but in more ways than not he has enriched mine and my family’s lives in ways I never thought possible. I learned how to balance his constant needs with that of my other children and prioritize what’s important and not to overdo at the expense of the other children. I learned how to accept help – this was a hard one – being that I am a very proud and independent person by nature.
I am trying to give back to the community by helping others from my learned experiences, through the services of a support group I formed together with my friend, for mothers of medically and developmentally challenged children. I hope and pray every day that Hashem grants us His favor and Yehuda should grow up to be a mentsch to the best of his ability!
Sarah Greenfield is an ‘informal’ support resource for families traveling to Cincinnati Children’s Medical Center, and can help with guidance regarding kosher food, lodging, transportation and any other technical arrangements. Sarah can be reached at 845-239-7109
Surah Zissel Greenfield – 845-239-7109