9 years after our 100-day stay at the NICU, I was suddenly paralyzed by PTSD. Every horrible feeling of fear, anxiety, despair, and anger came flooding back all at once, as a sucker punch to the gut. Emotional scars I thought long healed were bleeding again, as I hurt for my friend and for my own experiences.
“We have a unique approach that is a technique first established in Brazil by Dr. Lapa, and we brought it over to the United States. Dr. Quintero and I have put together a fetoscopic treatment that is FDA approved to repair open spina bifida, that is entirely percutaneous (there is no laparotomy and no hysterectomy),” said Dr. Ramen Chmait, Director, Los Angeles Fetal Surgery.
I saw my physician’s name come across my phone screen, and my heart sank. He explained that the ultrasound showed an abnormality, and he predicted a spina bifida diagnosis. I had no idea what that meant, and the rest of the words coming out of his mouth became a blur.
I was so, so terrified. Not for me, but for her. Would she be okay? Would she be in pain? Please just save her! As I wheeled away from my family, the only feeling I remember is fear. In the OR, faces I didn’t know surrounded me. I was squeezing the hand of a person I’d never met as they prepped me for the emergency C-section.
Spina bifida, which literally means “cleft or split spine,” is the most common permanently disabling birth defect in the United States. According to the Centers for Disease Control and Prevention, about 1,645 babies are born in the U.S. with spina bifida each year.
“There’s a major problem with your pregnancy.” Are words no expecting parents anticipate hearing. At our routine twenty-week ultrasound, the ultrasound technician got the doctor, and we heard the words that would forever change our lives. “The bladder isn’t releasing urine” and “the amniotic fluid level is dangerously low.”
Kangaroo care (KC, sometimes referred to as “skin-to-skin”) is the most optimal way to promote close contact and can be done by placing your diapered (undressed) baby on your bare chest. This seemingly insignificant practice will actually promote a strong and healthy relationship between caregiver and baby while helping baby thrive exponentially.
By 15 months, babies eat 6½ teaspoons of added sugars per day, mainly from fruit drinks, soda, cookies, sweetened yogurt and ready-eat-cereals, which are introduced into the diet as early as 9 months. What it means: To put that into perspective, an 8-ounce cup of cola has about 6 ½ teaspoons of sugar. So, babies are eating as much sugar in a day as what you’ll find in an entire cup of soda!
By: Kylee Bennett Nearly 120,000 infants are born with congenital defects each year, and they don't always go on to live happy lives. If you’ve received a difficult fetal syndrome diagnosis, you’re certainly not alone. During this challenging time, it can be easy to...
Growing up in the 1960’s, Dr. Diana Farmer’s mother taught Sunday school for disabled children where she first met children who had spina bifida.
“It was a really crummy disease,” Farmer said. Dr. Farmer is now leading innovative research, which holds promise of saving lives and lifetimes.
In the video she discusses the improvements that resulted from the initial fetal surgeries, including a reduction in the need for shunts. She now believes that with the latest breakthroughs involving fetal surgery and stem cells that the paralysis associated with spina bifida will be cured in her lifetime.
Most mothers would probably tell their child to sit down and stop standing on the chair in the middle of their family photography session. But when you’re told your son will never walk and he mischievously climbs onto a chair with no help and stands there, posing for the camera … well, you let him do it.
Your question should not be whether or not your child will find hazards in the home, but how soon and where will they find them. 2,700 children die from preventable injuries each year, and the majority of preventable injuries occur in the home. 120,000 children are permanently disabled from these preventable injuries. Learn the habits you should adopt to keep your children safe.
This time last year, I was taking a pregnancy test. Today, I’m the mother of a healthy four month-old little boy who loves to smile and kick his legs like crazy.
Johnna Kerres tells her story of the surgery she and her son underwent before he was born. The fetoscopic surgery contributed to medical research.
After a dangerous experience, mom Paula Yost Schupp encourages all pregnant women to be familiar with the signs of preeclampsia, even if they, like her, seem to have no initial risk factors. She tells her story of how she was diagnosed, and what happened as a result.
The Fetal Health Foundation Awarded the 2018 Research grant to Dr. Teresa Sparks and team at the University of California, San Francisco. They are working to understand the underlying causes of Hydrops.
By: Heather Mariano At 18 weeks pregnant, we had prayed to become parents for over a year and half before finding out that In Vitro Fertilization was our only hope at parenthood. With our first round of fertility treatment a success, our only prayer was for this child...
Chase Juergens came out blue. His mother, Alicia, had a caesarean section, and the nurses said that wasn’t unusual. Sometimes c-section babies take a little longer to catch their breath. They took him to the nursery for oxygen. Her husband, Michael, went with.
Our 4th annual digital issue of Connexion features resources, articles, and photos of children who are thriving after fetal syndrome diagnoses.
By Maureen Pray, NCCPT Certified Personal Trainer Exercising and staying active while pregnant is one of the best things you can do for you and your baby during your pregnancy. If you have a normal, healthy pregnancy and have been cleared by your health care...
If untreated, critical aortic stenosis and HLHS can be fatal. By performing this procedure before birth, it can promote improved growth of the left-sided heart structures and lead to fewer surgeries after birth. “These interventions were not possible 20 years ago. I’m proud to provide my expertise at UC Davis Children’s Hospital to help these babies,” said Dr. Ing.
Fetal Health Foundation Founders, Lonnie and Michelle Somers, Announce New Executive Director, Talitha McGuinness
The Fetal Health Foundation (FHF) recently announced the appointment of Talitha McGuinness, to the position of executive director. Established in 2004, FHF is a nonprofit organization that offers resources and support to those experiencing severe pregnancy complications known collectively as fetal health syndromes.
Expectant parents have a great deal on their agenda during the months leading up to delivery. With so much to do, managing the details can be overwhelming − especially when things don’t go according to plan. The truth is, whether you are a first-time parent or seasoned with experience, the journey can often be unpredictable.
When my wife and I received the news that our baby girls had Twin to Twin Transfusion Syndrome, we were devastated. That was 15 years ago and there weren’t a lot of options or resources available for those diagnosed with a fetal syndrome. Fortunately for us, we...