Tag Archives: disability

IVF Parent Wish List…

The lack of laws is creating an impossible mountain to overcome for IVF children and families much like a staircase for a person in a wheelchair. Help us to self-help ourselves. We don’t want pity, just laws for protecting our basic human rights and have an opportunity to be treated equally.

An IVF parent never tires, its ingrained in their DNA. Most people who become an IVF parent have experienced failure before success of  birth of a lovelyIVF-Wish-List IVF child. Every IVF parent’s journey is unique and not giving up is in their DNA. Even after multiple rounds of IVF treatment and failure, an IVF parent continues to find innovative ways to have a child. In every IVF parent is a very strong person overcoming several challenges, sadly, sometimes in silence and isolation due to the secrecy and stigma with infertility or dysfertility. The discrimination against IVF parent based on gender and biology is causing discrimination against IVF children and its time to begin to petition for a change. Stop dehumanizing children for personal benefit and rise above for the greater good. Currently, asking for basic if not equal rights for IVF children and families is the wake before the Brown V. Board of Education or Roe V. Wade or [Interracial marriage] V State of Virginia or the civil rights movement or the latest being DOMA’s revocation. We are beginning an IVF Movement for future rights of IVF children and families.

Theodore Roosevelt’s quote, “Far better it is to dare mighty things, to win glorious triumphs even though checkered by failure, than to rank with those timid spirits who neither enjoy nor suffer much because they live In the grey twilight that knows nether victory nor defeat.

Most people DO NOT know or understand what an IVF parent goes through. Statistically as per CDC data, about 1% of all child births are through IVF. Statistically, only 1 in 3 IVF attempts are successful. By conservative estimate, that would mean about 3% of the parents have experienced and attempted IVF resulting in success or failure. When you extend the number to the general population, the number is even smaller because not everyone is a parent in the general population. So we are talking about a very small minority of total population who actually have the experience of IVF. The medical doctors, the supporting medical staff help with IVF and are integral part of the IVF journey but do not go through the same roller coaster rides of emotions, finance, immigration, laws, etc. The IVF ecosystem is large – donors, surrogates, intended parents, and yes, most importantly the IVF child who physically go through the roller coaster rides of emotions, anxiety, sleepless nights, silence, isolation, keeping a happy face outside but crying on the inside, financial issues, legal issues, immigration issues, etc. Statistically, most people DON’T know or understand what an IVF parent goes through unless truth is allowed to be shared. Is silencing an IVF parent a sophisticated form of white collar crime and advanced child abduction and/or retention for personal benefit? What is the best interest of the child?

We begin the IVF Parent Wish List AFTER the Birth of an IVF child and in the best interest of the IVF child. Its been 35 years since the first IVF child was born, is it time to come out of secrecy and start asking for scientific information and legal rights for IVF children and families. If I had enough money as an IVF parent, I wish to…

1) Move Forward for Change – Advocate and donate huge sums for medical research on IVF children’s health, well-being and long-term needs like Michael J. Fox advocates about Parkinson’s disease.

2) Get a Celebrity Endorsement To Raise Awareness – Advocate for equal laws for IVF children and families by speaking the truth like Magic Johnson did by talking about HIV and changing the course of history in terms of medical funds and research for HIV/AIDS. What we need is more scientific data and research and not secrecy and lies.

3) Human Rights and Child Rights – Expose the inhumane conditions and fraud in the IVF industry where some rogue people have converted into a “baby making factory” with no respect for basic human dignity of an IVF child and others. Children need protection from a new brand of criminal –  IVFphiles. Erin Brockovich, Rosa Parks, Susan Anthony come to mind as inspiration in taking on a flawed system.

4) Scientific Research – Seek to understand the behavioral issues and any other health issues experienced by IVF children due to their unique birth circumstances as studies are now reporting. We need more studies in to help IVF parents and children not more silence and fraud. By accepting the truth and understanding issues if any, we can help innocent children better adjust to life and be all they can be.

5) Better Health – New studies claim that because of the IVF procedure, IVF children maybe at a higher risk of cancer like leukemia. In case an IVF child needs a bone marrow, will the “biological link” help save his life or will the fraud birth documents falsely claiming an intended parent as the biological parent? What is needed is more scientific evidence and not furtherance of secrecy, lies and fraud as it hurts innocent IVF children apart from it also breaking the laws.

6) Best Interest of the Child – There are several parents with children of Down’s Syndrome, ADHD, ADD, cystic fibrosis, Tay-Sachs Syndrome and other medical conditions. As any parent, they are looking for a normal if not better future for their children. They are looking for an environment of basic rights if not equal. Same is true of an IVF parent who wants protection of basic human decency and respect for the IVF children and not to be treated like “property” even if inadvertent. Only sharing of facts and truth can reveal this, silence and secrecy only further victimizes innocents and worse it does not benefit in getting laws changed or passed creating more innocent victims possibly in the future. 

There are several other issues specific to the health and well-being of an IVF child far too complex to go into in 2013. The ethos of USA has been to say the truth to seek change and justice even if spread across decades. Maybe we need to wait a few more years or decades before we are allowed to come out as proud IVF parents facing real issues and challenges instead of being deemed offensive. The bill of rights for IVF children and family has neither been thought of yet nor a priority because it affects a very small minority. Is it OK to continue to victimize the most vulnerable of the vulnerable? For others, a victimized IVF child and denial of their rights and respect as a human being may just be a “statistic”, for an IVF parent the child is their LIFE who deserves basic human dignity if not equal.

Legal Disability and Discrimination of IVF

We do not expect our governments to get rid of our disabilities and help us climb stairs or help us see, but we do expect our governments to pass laws sodisability-discrimination-ivf that there are ramps to buildings and Braille on public boards and so on so people can self-help. We do not expect our governments to give a child to every human but we do expect our governments to have laws for all children (including IVF) to be treated equally. Anything less is a test of time and is discriminatory. December 3 is International Day of Persons with Disabilities.

I love you my children because you are wonderful children and you are a wonderful human being. Second because you are my children and inherently every parent loves their child. Third you symbolize something much bigger than you or me because of the gifted way you came to our world with compassion, struggles, sacrifices of several people – humanity at its best. As part of an international IVF, immigrant family in 2000s with lack of laws, we are rendered effectively with “legal disability” and discrimination. Do we continue to suffer in silence or do we state the truth and ask for help (not pity)?  In the near future (I hope but life has taught me it will be distant), gender of a parent or the biology of a parent will not be used to discriminate against innocent children. Over the years, human society has struggled with political correctness on how to deal with disability and discrimination of humans and different societies deal with it differently. What is critical is results count and effects of our actions or inactions count. Can we extend a hand to help or do we chop off the hand that tries to help? Can you help an IVF child get home? – The answer is simple, pass laws for their real-life situations and needs.

In some countries, it may be illegal to discriminate against people with disabilities but still no services are provided that can provide self-help. For example, public signage should be Braille compliant or public buildings should be ramp compliant for wheelchair access and so on. So while there may be laws to punish discrimination, are we providing “help” to seamlessly allow disabled people to grow, develop and feel empowered on their own? Most developed countries have both laws AND services to address the real life issues and concerns, where do innocent IVF children fit in to the puzzle? Neither laws exist for them nor help exist for their specific needs and issues, are they invisible? Are they also equal human beings who deserve basic human rights and decency if not equal? Do surrogates deserve protection and rights for the services they offer in terms of a gift of an IVF child? Or should they be abandoned or mistreated? If intended parents sign up for an IVF child and then file divorce during an ongoing pregnancy, why should that be an issue/problem/denial of basic human rights for the IVF child and/or the surrogate? What counts is the current state rather than how we got here. Current state is that in some cases IVF children are being discriminated due to no fault of theirs. Whether it is an accident in the IVF clinic resulting in a DNA mismatch and thus the immigration laws are triggered separating the parent and IVF child OR a birth mother who used donor eggs and sperm but not having a “biological link” as defined in the laws OR a biological father who used donor eggs and surrogate but has “no legal mother” of the IVF child OR when a divorce is filed during an ongoing IVF pregnancy. These real-life situations are placing innocent IVF children in legal limbo and violating their fundamental and basic rights as a human being. If you are “invisible” in the legal system with no legal identity, can you demand for your legal rights? Do “invisible” human beings have rights?

The special situations create a “disabled” world of legal limbo for innocent IVF children. While the laws may be inadvertent, our inactions and not passing any new laws to protect the innocent IVF children is discriminatory. The IVF child has been made “invisible” of their needs and issues and that causes their “legal disability”. As an IVF parent, I have been through several roller coasters – emotional, financial, social, physical, spiritual, and so on. I love my IVF child so much that went through the roller coasters all over again for another IVF child. And then to have them grow up separately due to no fault of theirs, rather, using my gender as an IVF parent to discriminate and separate them is worse than appalling, it is heinous. One can understand the lack of laws, but to show utter disregard and basic human decency for a human life and that too innocent children is heinous. To the world, deliberately separated IVF children may just be a statistic, for me they are everything (all IVF children). In one case, they are two beautiful IVF brother and sister – who deserve the best and who deserve basic rights if NOT equal. Equal rights for IVF children is a dream that may not be achieved in this lifetime because of the snail’s pace of progress on this sensitive subject, so help us at least by giving us basic human rights, if not equal.