Rédaction Africa Links 24 with Allen Goldberg
Published on 2024-02-27 09:30:13
When my wife, Laurie, completed her ninth in vitro fertilization cycle in the spring of 2000, we had more than 150 fertilized embryos in frozen storage at the Center for Reproductive Medicine and Infertility at the NewYork Presbyterian Hospital-Weill Medical College of Cornell University. These embryos were not being stockpiled for later use but rather for a very specific purpose. Our son, Henry, had been born with a fatal genetic disease called Fanconi anemia, and we were utilizing IVF along with preimplantation genetic diagnosis (PGD) in the hopes of not only having a healthy baby but also potentially saving Henry’s life through a cord blood transplant.
Fanconi anemia is a devastating condition that causes bone marrow failure, organ defects, and an increased susceptibility to cancer. When Henry was born, the prognosis was grim without the possibility of a suitable donor for a transplant. However, with a perfectly matched sibling as a donor, there was a much higher chance of survival. This led us to undergo multiple IVF cycles with the goal of only implanting disease-free embryos that were also a genetic match for Henry.
Our journey involved 353 injections and procedures over nine IVF attempts as we navigated the complexities of genetic screening and infertility treatments. Despite our efforts, Henry’s health deteriorated, and we ultimately had to proceed with a transplant from an unrelated donor. Tragically, Henry passed away at the age of 7 after a tumultuous battle with the disease.
Despite our personal loss, the impact of IVF and PGD on families cannot be overlooked. These techniques have allowed thousands of children to save their siblings’ lives through cord blood transplants, a stark reminder of the life-saving potential of these reproductive technologies.
While there are ethical considerations surrounding the use of IVF and PGD, the decision to undergo such treatments is deeply personal and should be made thoughtfully in consultation with medical professionals. For families facing genetic diseases with fatal outcomes, PGD offers a glimmer of hope for healthy children and intact families.
In the aftermath of Henry’s passing, another family began their own journey with PGD, eventually conceiving a child whose cord blood saved her brother’s life. This story underscores the profound impact that these technologies can have on families grappling with serious genetic disorders.
As the debate over the legal status of embryos continues, it is crucial to remember the real-life implications of IVF and PGD on families. These technologies have the potential to prevent disease, prolong life, and save the lives of those in need of a transplant.
In the face of loss and grief, families like ours find solace in the hope and possibilities that IVF and PGD provide. These technologies have the power to transform lives, create healthy families, and offer a lifeline for those facing genetic diseases.
As we reflect on our experiences, we are reminded of the resilience and courage of families navigating the complexities of genetic disorders. The voices of these families must be heard and considered as policymakers contemplate the future of reproductive technologies and the ethical implications that come with them.
Our journey with IVF and PGD may have been marked by loss, but it also serves as a testament to the resilience and hope that these technologies can provide. While we continue to mourn Henry’s absence, we take comfort in knowing that his legacy lives on through the lives he has touched and the families he has inspired.
