These Parents Discovered That All Four Children Had FNAIT

Alicia McGrew’s first baby was born eleven years ago.  The new parents checked their baby and found him to be “perfect”. Then Patrick, Alicia’s husband, noticed a few small red dots that he brought several issues to the attention of the delivery nurse. He asked about several red spots on the baby’s leg, but the nurse said not to be concerned.

The newborn also suffered from excessive bleeding from the routine vaccinations. These incidents occurred again the following day with excessive bleeding at their son’s circumcision. Their doctor said that in an abundance of caution he would also order a blood test (CBC) to confirm that everything was in order. Once the CBC test had been given to the baby Alicia began preparing to leave the hospital. Within minutes the neonatal team rushed into the room and told Alicia that they had to take her baby to intensive care immediately.

Alicia was alarmed and at first questioned the men, but their curt answer was that they were saving her baby’s life. She was confused but dutifully followed them to the ICU. Later Alicia learned that her baby’s platelet count was very low. Platelets are critical to prevent profuse bleeding by forming small blood clots. The baby’s platelet count was checked and registered 10,000, slipping to 8,000 after being rushed to NICU.  A normal count is 150,000 to 400,000.

The doctors immediately began two transfusions of whole blood followed by three infusions of intravenous immunoglobulin (IVIg) administered by way of his umbilical line that increased his platelet count. The baby was discharged within the next several days. Alicia does not recall specifics of their time in the hospital and had not received an official diagnosis. She was just happy to be home with the baby and her husband.

When Alicia became pregnant a second time, she was ready to delve into the severe reduction in her first son’s platelet count. She searched the web and came across a disorder called fetal and neonatal alloimmune thrombocytopenia (FNAIT) that involved low platelet counts. Alicia also found a Facebook page to support families who were impacted by the disease.

About FNAIT

The disease is the result of a mismatch between the platelets of a pregnant person and the fetus. The disease is rare and life threatening. Treating the disorder is extremely complicated thereby creating a sense of urgency to develop lifesaving options. Genes are inherited from each parent that determine the baby’s platelet type and features.

As an additional explanation, when the baby’s blood moves across its placenta and interacts with the pregnant individual’s blood, an immune system called alloantibodies forms in the pregnant person’s body. Dr. Abouzahr explained that the fetus’ platelets can be overwhelmed by maternal antibodies. If the fetus cannot eliminate them rapidly, it can result in severe consequences.

Babies may experience hemorrhages in the brain or in the gastrointestinal tract. Surviving a hemorrhage does not always lead to good health. Between 20-70% of babies who survived brain bleeds continue to experience neurological problems. Currently, tests for FNAIT are performed only in instances where an older brother or sister has the disease. A firstborn is usually not routinely screened until after their birth or when symptoms are evident. Therefore, most parents as well as medical personnel may not know that the infant is at risk.

Since her last pregnancy, Alicia has discovered that now her four children have FNAIT. Fortunately, they are living a full and active life. But she cautions that not all physicians, including the hematologist and an OB/GYN she encountered, are familiar with the disorder. She admits that trying to get help was difficult.

Treatment tends to be risky and may be invasive. Blood platelets from previous pregnancies are often outsourced to specialized labs for diagnosis. At the time of Alicia’s second pregnancy her husband’s military unit had been deployed, creating the need for an amniocentesis, which is an invasive procedure enabling the fetus to be tested.

IVIg Precautions

For a limited time IVIg, which was collected from donated plasma, had been used as a protection to protect the baby’s platelets if a mismatch occurs. IVIg has been used mostly off label and was not FDA approved for FNAIT.

Alicia’s received various IVIg formulations that caused nausea and headaches. One type of IVIg caused such a severe drop in her blood count that she had to be admitted to the ER for transfusions. Alicia finally located an IVIg brand that seemed to work well during the fourth pregnancy. However, that brand had recently been discontinued.

Although IVIg is not fully understood, it is believed to prevent antibodies that go on the attack against the fetus’ platelets. It also reduces the platelets that traverse the placenta. Currently there are forms of IVIg available for treatment, but it must be emphasized that IVIg simultaneously suppresses that person’s immune system.

Treatment options centered on antibodies and the pregnant individual’s alloantibodies are needed. So much has yet to be accomplished that Alicia’s advice to parents is to follow their instincts, but most of all, be ready to be proactive concerning your baby’s wellbeing.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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