Baby Isaiah’s Story: Brittle Bone Disease (osteogenesis imperfecta).

Latest Update: Update #2 Whitney is making progress with Baby Isaiah’s team. She and Isaiah still need your help and support though. From Whitney Manning;

“My name is Whitney Manning I am a family advocate and working with this young family in West Virginia. This is a young family with 3 small children ages 5, 2, and 6 months. The father is a college student with some disabilities himself. The mother has stayed home and has cared for the young children. In May of 2021, she delivered her youngest little boy. The mom had a complete placenta prévia and almost died ( taking 7 units of blood) as well as her baby who was born at 32 weeks. The baby was born with many life-threatening issues and genetic birth defects. While in the NICU, the parents were unable to hold their baby for many weeks. The baby was finally released on July 3, 2021. During all of this time the parents were never told of the many life-threatening birth defects that the baby had. The parents were only told that he had respiratory issues due to being a 32-week baby ( I have gone through all medical reports extensively and have consulted medical experts). On July 22, 2021, the baby had a major seizure causing him to be resuscitated and transported by EMT to the hospital. During the transport, the baby went into cardiac arrest. The baby was airlifted to a children’s hospital in another state. During this time the many birth defects were discovered and made aware to the father. The baby was diagnosed with Levacardia ( heart and organs on the wrong side) seizures, Brady Cardia, anemia, many broken bones, respiratory issues, Osteopenia of prematurity, connective tissue disorder, and other Comorbidities which includes severe metabolic bone disease. Baby Isaiah is in need of the best medical treatment facility in the country in order to be treated properly and cared for along with the best medical team that specializes in these horrible genetic disorders. This will give him the best chance at a quality of life.This young family is in need of funding to be able to travel and take their son out of state to receive medical treatment. State insurance will not cover the proper care that is needed for this child. We have located an expert in this field who has taken cases from around the world. We need funding for the expert as well as travel and living expenses. It has been very difficult to travel as one has to stay behind with the other 2 young siblings. They are also in need of transportation, as right now they have had to rely on the grandmother. Baby Isaiah needs your help as does his parents.This young family is in desperate need of any financial assistance that we can get. Without your help the future for baby Isaiah is pretty grim. Baby Isaiah needs expert medical care now. To date Isaiah is in and out of the hospital and has yet to even be seen by an orthopedic doctor or any specialist. The resources are very limited in this area for medical. Please consider giving so that Baby Isaiah can be transported to a hospital out of state that specializes in his birth defects. This little guy has been through so much since birth. The family needs your help. Please share and pray as we believe in the power of prayer and the miracles that can happen. Please feel free to reach out with any questions that I may be able to answer for you. The family and I thank you from the bottom of our heart.” TO HELP WITH MEDICAL FOR ISAIAH CLICK HERE

Baby Isaiah released from Marshal Hospital in WV with Brittle Bone Disease

Baby Isaiah was released from Marshal Hospital in WV with no instruction for his care. The parent was not even told that he has brittle bone disease. The mother went to jail and has since bonded out, Grandmother is trying to save her family, Isiaiah is back in IC after being placed in a fostercare home

Isaiah is a newborn baby that was born prematurely and with all of his bones broken in West Virginia a few months ago at Marshal Hospital, but the hospital staff never told Baby Isaiah’s parents that his bones were broken at birth or that he was born with Brittle Bone Disease.

Brittle bone disease also called osteogenesis imperfecta is a genetic disorder that causes bones to break very easily, usually without any type of injury. There is no cure for brittle bone disease, and it can affect anyone. Brittle Bone does not discriminate. It affects all races and sexes equally. (WebMd)

Collagen is a protein in your body that forms and strengthens bones. Usually, a defect in a gene that makes collagen causes Brittle Bone Disease to be passed down through generations or inherited from family members and makes the bones very weak. Sometimes a child does not inherit the gene from either parent, but the gene mutation develops on its own.

The main symptom of brittle bone disease is broken bones. Symptoms can range from mild to severe and exhibit themselves after birth or in teenage years. For babies like Isaiah, bones break so easily that just changing a baby’s diaper or picking a crying baby up to comfort can break the child’s bones. They break very easily. A baby’s bones can break just from being burped.

Frequent nosebleeds, bruising, blue color in the white part of the eyes, bowing legs, troubled breathing, discolored teeth, scoliosis or curved spine, feeling very tired, skin that is easily hurt, hearing loss, sensitivity to warm temperatures, loose joints, short height, and weak muscles and tissues are some symptoms.

Babies usually die in the womb but sometimes they survive birth. There is no cure for brittle bone disease, but treatment can relieve symptoms, prevent breakage of bones, and maximize movement. However, there are many other cases of people with this brittle bone disease living healthy, productive lives with monitoring on a regular basis and the right treatment.

A family advocate from Virginia, Whitney Manning called me a couple of months ago asking me to “pray for this baby”. She went onto say that a grandmother had called her and wanted her help with her grandchild’s case. Isaiah was born in May 2021 at Marshal Hospital in West Virginia. Hospital staff sent the baby home without ever telling the family the baby’s bones were broken at birth and with no instructions for Isaiah’s care and treatment.

Baby Isaiah’s parents later returned to the hospital with a crying very discomforted and hurt baby and were accused of child abuse. But the family says there was no abuse from the parents. Whitney went through the case and spoke with family members, doctors, and caseworkers. She combed through over 2,100 medical records on this baby that was just born in May, just five months ago. 

Whitney uncovered that the baby was born with multiple birth defects.  The ICU at Marshal Hospital never allowed the family to touch or hold Isaiah, but he was discharged with no word of the brittle bone disease or how dangerous it would be for the parents to even take the baby home.

Isaiah’s follow up appointment was on July 3rd and on July 5th. On July 20th, Isaiah received five vaccinations, and on July 22nd Isaiah seemed lifeless. The mother’s boyfriend tried to revive Isaiah as she drove them to the hospital and that is when they found out that Isaiah had brittle bone disease. His ribs were broken, he had a broken femur, Tibia, leg, and a head trauma.  

The hospital called child protective services to the hospital and filed reports claiming that the parents abused Isaiah. Since Isaiah was removed from his family, they have found out that Isaiah was born with metabolic bone disease, born with broken ribs, lower leg fracture-and a broken femur, and Hunters syndrome. These are genetic hereditary diseases.

Since being placed in foster care, Isaiah has been admitted back to the hospital and placed on life support. He was admitted with another broken leg and a broken eye socket , sepsis, RSV, and complete organ failure.

Whitney and the grandmother have been able to obtain medical records that confirm the broken bones and other injuries happened during Isaiah’s birth. The prosecutors are not allowing the evidence in the court at this time, and they may not. Still, the medical records are there that show that Isaiah’s bones were broken at birth and that the hospital released Isaiah with no instructions to care for him.

Whitney is driving back and forth from Virginia to West Virginia to gather records and meet with a multidisciplinary team that is assigned now to Isaiah’s case through the court system.

UPDATE #1: I don’t usually share gofundme’s but this family needs help and they have a gofundme set up. I am also going to pray for this family and raise awareness to how devastating legal and medical systems can be to families that need help. I hope you will too! Thanks

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Patty

I love life and people. I am a daughter, mother, and a grandmother.

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