Chai Lifeline: 2 Powerful Letters from Lakewood Mothers Whose Children Have Been Treated at CHOP

Regarding the United Healthcare/CHOP issue.

For pointers on how to write your own letter, please email [email protected].

If you sent a letter to the Governor’s office, please email it to the above email address for it to be kept on file.

#1

My name is Sara. I am writing in regard to the termination of United Healthcare’s contract with The Children’s Hospital of Philadelphia.

Almost two years ago, I gave birth at Monmouth Medical Center in Long Branch, NJ. As my son struggled through his first weeks of life, he was cared for with tremendous dedication by the doctors and nurses of MMC Nici.

At six weeks of age, the team of doctors informed us that they had done all they can and could not keep him stable. He continued to struggle on maximum support and they had exhausted all their options. They said that they need to transfer him to a special team at CHOP, where he’d have a higher chance of survival.

It was the first night of Sukkos, but without delay, my son was transferred by helicopter with a team of medical staff and I followed behind in an uber.

At CHOP they immediately made some modifications, such as feeding him through a jejunal tube to bypass his stomach, re-introducing nitric oxide, sedating him, and putting him on a different ventilator.

Our son Baruch spent more than a year as in-patient at CHOP. Over the course of that time, under the expert care of the doctors at chop he benefitted from various different ventilators, including their specialized VDR, g-tube with a fundoplication, was followed weekly by their ROP specialty team, participated in the FLOAT study, treated by the pulmonary hypertension specialist, and their renown lymphatic specialist and much more…

After extensive superior parent training by CHOP, we brought our son home, ventilator dependent with Gjtube feeds.

Our son has been at home for a half-year now and continues to make tremendous medical and developmental progress, thank God! He is a thriving toddler with the expectation to be weaned off his ventilator and gtube eventually; with the ability to lead an independent and functional life. We needthe continued services of the renowned specialists at CHOP to make this happen.

At this time when Baruch needs twenty four hour care, I need easy access to his many providers as we have now, through constant communication through the MYCHOP app, weekly phone consultations, and frequent appointments.

Even if some exceptions will be made, prior authorization needed will not provide the timely, accessible, and centralized care that we need.

Our whole medical situation is a tremendous financial burden on us and getting private insurance is not a possibility for us. Until my son was born I worked as an occupational therapist but I am unable to return to my job due to the tremendous homecare nursing shortage (which is a subject of its own which I will perhaps address at another time) and the intense care that he needs.

We need you to make sure that proper medical care is available for all the families in New Jersey, regardless of their income bracket.

What would have been our story had Monmouth Medical Center been unable to transfer her to CHOP when it was medically necessary?

What will be our story if all the providers that we have now cannot provide consistent continued care?

What will be our story if we will be denied approval to consult with new providers and as may be needed for our son’s complex care?

All New Jersey families must be able to access the medical care they need. Please ensure that New Jersey families are not faced with tragic repercussions due to their inability to access proper medical care when needed!

With a prayer on our lips that you will be a messenger in helping ensure medical care for all New Jersey residents.

Wishing you much continued success in all your work!

With much appreciation,

#2

To Our Honorable Governor,

Currently, the State of New Jersey does not require UHCCP NJ or any other Medicaid Managed Care Provider in New Jersey to ensure direct access to the highly specialized pediatric care that children need, leaving families with few to no options, we as parents have nowhere to turn and from my understanding it is Your Honor who can make that change. We as parents of children with special needs aren’t requesting services to benefit ourselves. We were given the opportunity to care for Gods children. We are handpicked as we understand our children are not mistakes they are perfectly imperfect and as they are known to the world as Special Children.

I reach out on behalf of ALL PERFECTLY IMPERFECT children and their parents and caregivers as this is not a situation that only effects my family but effects every family with a child with SPECIAL NEEDS.

Meet Malka.

Our dear Malka was born in Children’s Hospital of Philadelphia and was there for nine months until we were able to bring her home. She was born with a disorder which affected the length of her legs. She is now 3 years old and growing up and has gone through multiple surgeries to help lengthen her legs with many more to follow. But she is no different than any other girls. She will be treated no different than anybody else. This does not deter her in any way from accomplishing and climbing to the top of the ladder. She is lighting up the world with her talents as God is with her in her journey.

We are now facing a tragic situation as we are losing our insurance coverage from the state of New Jersey as they are denying their coverage in CHOP hospital. Unfortunately there are hundreds if not thousands of New Jersey-ans who are on UHCCP who will have to fight to cover basic costs. just imagine the stress a parent has to watch their child go into surgery or go for treatments, I can tell you it is very hard and at times I want to say let’s just leave the leg ‘as is’, as this is how she was born and she’ll learn do deal with it. Aside from the fact that i would do ANYTHING for my Malka I would NEVER just leave her ‘as is’, because how can I hold her back from accomplishing all which she has?? 3 years ago if you would’ve told me where she would be holding today and listed all the accomplishments she has made, I would’ve laughed in your face. So how can I imagine where She would be in 3 Years!! Unfortunately if we don’t get the coverage we need she may not be able to make those accomplishments. She will then ask me “Daddy, why did you stop doing surgeries?” your Honor, What will I answer her? Will I have to say “Governor Murphy didn’t approve you to continue in CHOP and we only want to go to the best doctors for you and we are not putting down any local doctors but you are a very complex situation and have a very rare syndrome therefore we can’t risk you by not giving you only the greatest care possible by going to the only the greatest doctors.”

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