Tag Archives: parents

Designer Babies: The Genetic Saviors

Tell A Story – a column where riveting South Asian stories are presented like never before through unique video storytelling.

Genetic Engineering has always been a promising field of science right from its inception, but to advance to a level where babies can be designed before conceiving is definitely fascinating to note. 

Known as Designer Babies, their genetic makeup is pre-selected and altered to serve a purpose as needed. Using pre-screening and gene editing, many such babies have been created so far to save families. Conceived to save siblings from rare genetic disorders, they are also termed as savior siblings. 

It’s been 20 years since the first designer baby was born to the Nash family from Denver, Colorado, but the news is still a miracle to many. Adam Nash was conceived for his stem cells from the umbilical cord, which was later used for the life-saving treatment for his sister suffering from Fanconi’s Anemia. The controversial decision though saved his sister from the rare genetic disorder, it triggered an ethical battle and the family still continues to fight the backlash. 

Many questioned them for the motive of conception and few demanded explanation for challenging Darwin’s theory of evolution. Scientists continue to fear the consequences that may evolve in the future as the technology develops and gets adopted by the masses. 

The success of the first designer baby opened doors for many families that have a legacy of rare inherited genetic diseases. Since 2000, many countries have emulated the technology to save families. India had its first savior baby in 2018. Kavya Solanki conceived to save brother Abhijit from a rare blood disorder, thalassemia major. 

This powerful technology involving alteration of DNA sequences and modification of gene function is known as CRISPR technology. In-vitro fertilized embryos are genetically screened using preimplantation genetic diagnosis to find the one embryo that would be a potential bone match for their older siblings. Following this, the genetic makeup is selected or altered, often to include or remove a particular gene or genes associated with a disease that runs in the family. 

Though benefitted a few, scientists fear the rise of an elite class of genes created with illegal intentions. Gender diagnosis, trait preferences, the endless list of alarming consequences goes on; that may pose a major threat. Few scientific researchers have also raised concern over the health risks to human species with such creation of future generations. 

Tell-A-Story sheds light on this unique technology and its prospects while sharing the experiences of those families who have had designer babies, as they talk about the backlash, the need, and question of consent of the newborn. The video story also addresses the legal framework, future implications, and what lies ahead! 

Suchithra Pillai comes with over 15 years of experience in the field of journalism, exploring and writing about people, issues, and community stories for many leading media publications in India and the United States.

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Rising Healthcare Costs Make Patient Care Difficult for Visiting Parents

U.S. President Donald Trump and presidential candidate, Vice President Joe Biden, are united by one issue at least – the rising cost of medication.   

This July, prices rose 3.1 percent on average for 67 drugs compared to the same period last year. GoodRx points out that the increases came on the heels of a 6.8% surge, on average, from January to June 30 of this year – manufacturers raise prices in January and July annually. And for many Americans, this means not filling their prescriptions. In a new poll by Best Health and the Global Strategy Group of 4,200 potential voters in Arizona, Colorado, Georgia, Iowa, Maine, Montana, and North Carolina, the main battleground states for the Senate, 22 percent of the respondents said they couldn’t afford medications prescribed by their doctors. More than a quarter (26%) said they or their family members were unable to seek treatment for a health problem in the last year due to cost concerns.

Rising costs have also affected another demographic – parents from India visiting their offspring. Thousands of older Indians have had to extend their stay as a result of travel restrictions amidst the pandemic earlier this year.

“My father is 75 years old and has had benign prostate hyperplasia (BPH) for about 10 years. His urologist made the very unwise decision to perform surgery for my father’s BPH right before he came to visit me. He’s been experiencing complications from that ever since,” says Dr. Debyani Chakravarty, a new mother and a faculty member in the department of pathology at the Memorial Sloan Kettering Cancer Center in New York. “I bought both my parents’ travel insurance but since these are complications from surgery, nothing is covered. I pay $300 per consultation with a doctor here, $300 for my dad’s cystoscopy, $100 for labs, and $200 for his meds so far. In Pune, their medication (alone) would cost at least ten times less.”

Another set of parents visiting their daughter, also a new mother in New York, were Sushima Sekhar and her husband from Chennai. Both had to postpone their return and were running out of their diabetes, blood pressure, and cholesterol medication they’d brought from India. 

Their daughter’s physician, Sekhar says, asked to see them in order to prescribe. “The consult per person was $250, quite steep,” she recalls. “In the meantime, we got the number of a COVID Tamil Task Team which was doing an unbelievably great service to stranded Indians here. They had chemists and doctors in their group. All we had to do was give them our Indian prescription, and they would find the equivalent generic low-cost drug, double-check with their doctors, (and issue us a prescription here). We kept them as a last resort because the price of meds, however low, was way too high when converted in Indian rupees – anywhere between five to fifteen times higher.”

Sekhar eventually succeeded in getting the medication couriered from India, after that avenue opened up following a lockdown there. 

But for many others, obtaining affordable medication in time without missing dosages would have been impossible but for voluntary groups such as the COVID-19 Tamil Task Team, and Non-Resident Indian doctors in the Telugu community. 

Dr. Saraswathi Lakkasani, a Telugu NRI doctor who is helping parents visiting from India.

“The federal government relaxed telemedicine rules (as a result of the pandemic), and I wanted to help these people stranded here. For one prescription to go out, we had ten volunteers working on it,” says Dr. Saravanan Ramalingam, a trauma surgeon in New York who helped launch the service. The initiative gained momentum after the group had a conference call with Shatrughna Singha, Deputy Consul General of India, New York, who was keen that Indian-origin doctors provide help to visiting older Indians in need of healthcare and medication, Ramalingam points out.  

Vasudevan Kothandaraman, an IT professional in New Jersey, helps to co-ordinate within a group of around 30 volunteers. The quality checks are stringent, he says, and prescription requests are routed through the app Freshdesk. Volunteers verify the Indian prescription and refer patients to a telemedicine team of doctors if required. A group sends the list to local pharmacies to find out if an American equivalent of the drug is available. If it is, the verification team, consisting of doctors, nurses, and pharma PhDs search for a cheaper, generic alternative. The prescription team reviews the process, and a doctor faxes a prescription to a pharmacy nearest to the patient’s home. “If the cost is really high, we provide them with GoodRx type of discount coupons,” Kothandaraman says. “We have issued 400 prescriptions (at the start of the pandemic lockdown).”        

Now, a fall surge expected by the Centers for Disease Control and Prevention could again intensify the struggles of older Indians visiting in the U.S., and those who have extended their visas to be with family. 

Doctors are standing by to help. 

“One Telugu lady, a mother visiting her family in North Carolina, had recurring urinary tract infection. She was stuck here because of the lockdown and had no clue where to go and what to do,” says Dr. Saraswathi Lakkasani, an internist who was recently awarded a fellowship in gastroenterology and hepatology by the New York Medical College. “I heard her medical history – she had co-morbidities – and prescribed antibiotics at a CVS Pharmacy close to her. Told her to drink plenty of water and some cranberry juice; her symptoms were gone within a week.”

Lakkasani pauses, adding reflectively: “She is an elderly stranger, she is talking in my language. It moves you.”  

Sujata Srinivasan is a business and healthcare journalist in Connecticut. Find her on Twitter @SujataSrini.

Featured Image by Harsha K R.

A Mother’s Unconditional Love

Wooooooosh, a loud exhale, and then a soft inhale. I could hear my young daughter quietly scurry across the hallway calling her brother in hushed tones. Long before I knew it, they both were sitting in the lotus yoga pose, imitating me, with their eyes closed, making those absurd exhale wooshes. Along came a giggle and then another until they fell over laughing holding their tummies, making me laugh out loud while enjoying this strong mother-child bond. 

Motherhood is the noblest of callings and a privilege to be entrusted with a tiny human life. Motherly love is unconditional and is the foundation of a child’s growth. This kind of love helps foster self-confidence and has a long-lasting impact on developing their minds and shaping their conscience.

The role of the mother is to watch, teach, guide, and help in the growth and development of a child. There is an unfathomable, deep, trusting love that connects mother and child.

Motherhood for me is a privilege and an adventure. It is guiding my children to be the best versions of themselves and make good choices. To help them to grow to be kind, confident, caring, and loving. To be their cheerleader, to hold their hand, and at the same time teach them boundaries. Being a mother is ensuring a feeling of safety and love though it sometimes comes with fears, worries, and heartache. Motherhood is a gift to be grateful for and the joy of seeing the wonders through your children’s eyes

Don’t we all come to a realization that “Oh no, I have become my mother.” It is not a bad thing. You start saying some phrases like her and even your expressions take on those of your mothers.  I recall my charming mother who took the time to talk to me about politics, finance, and just about everything. She was full of life and came down to my level of wanting to have fun and a deep bond grew. I am so grateful that she was my guiding light.  I miss and thank you, mom!

You don’t need Mother’s Day to take time to talk with your mom and give her some of your time. We tend to hear about ourselves but do we take time to ask our moms more about themselves? Here are a few questions to help you. 

(i) What’s something you wanted to do but didn’t….why? 

(ii) Who were your role models when you were young and do you have any now?

(iii) Was there a situation that made you see the world differently?

(iv) What was the first year of motherhood like for you?

(v) Describe your perfect day.

Being a mother is a joyous gift, being blessed and also the toughest with its fears and worries. Take heart in the love you receive from your mother…she holds your soul in her heart! 

Geetanjali Arunkumar is a writer, artist, life coach. She is also the illustrator of the oil painting used as the featured image.