Mandy and Oscar pregnant again – second child had to be approved by the ethics committee

“In loving memory of our little hero and big brother Rio, who as an angel will always look after his siblings!” With these words, Mandy Brobeck and Oscar Ogorkiewicz share a photo of a positive pregnancy test on Instagram. The couple, both influencers, had suffered a terrible loss over the past year. Their son, Rio, died at the age of only four and a half months as a result of a genetic defect.

Rio suffered from a very rare immune disease called IPEX Syndrome. Even a stem cell donation could not save the baby, only three days after the operation the life-support equipment had to be turned off. His parents report this on Instagram, where they also documented Rio’s struggle for survival after pregnancy and birth. And finally, how she dealt with the terrible loss.

The two also answered questions from subscribers on their channels. In December they said they were thinking about having a second child. Using artificial insemination. That has now worked, shows the post on Instagram.

In order to have the child, however, the approval of the ethics committee was necessary. The reason: Mandy is the carrier of IPEX syndrome, which her son Rio contracted. A second child could also get the disease. In order to prevent this, the ovum had to be “filtered”, the 28-year-old explained in December. However, according to Mandy, approval from the ethics committee is required to examine the embryo for the gene ahead of time and to filter the egg cell.

This is based on the Embryo Protection Act. This regulates the handling of embryos in Germany and is intended to protect them, like the Federal Center for Political Enlightenment writes. Certain examinations are prohibited. The misuse of reproductive techniques should also be prevented.

However, if there is a suspicion of a serious hereditary disease, the ethics committee can still allow certain procedures, such as cell removal. That fixes it Preimplantation Diagnostics Act. In the case of Mandy and Oskar, the ethics committee had to allow the artificially created embryo to be examined before it was transferred to the uterus.

This is behind the IPEX syndrome

IPEX syndrome is a “rare, hereditary autoimmune disease that leads to disorders of multiple endocrine glands and inflammation of the intestine,” as pediatrician Jennifer M. Barker on the portal „MSD Manual“ explained. The endocrine glands are organs that produce one or more specific hormones.

inheritance:

The disease’s name derives from the symptoms that are most common in affected individuals. IPEX stands for:

• I immune system dysregulation (problems with the immune system)
• P olyendocrinopathy (disorders of more than one endocrine gland)
• E nteropathy (bowel disease)
• X -chromosomal (defective gene is on the X chromosome)

Boys are mainly affected by the disorder. It depends on the type of inheritance. “The defective gene is on the X chromosome, which is one of the two chromosomes used to determine sex,” explains the doctor:

• Females have two X chromosomes. “So if one X chromosome contains a defective gene, the woman still has the other chromosome with a healthy gene available.
• Males only have one X chromosome. “So if they inherit a defective gene on that chromosome from their mother, they get the disease.”

Symptoms:

The IPEX syndrome manifests itself through the following symptoms:

• greatly enlarged lymph nodes, palatine and pharyngeal tonsils and spleen
• Diabetes Typ 1
• red and irritated areas of skin
• food allergies
• infections
• prolonged and severe diarrhea

Course:

“Untreated, IPEX syndrome is usually fatal within the first year of life,” writes Barker. A stem cell transplant can prolong life and alleviate some of the symptoms of autoimmune disorders. In the case of Rio, however, that was not possible.