The Number of Pediatric Emergency Rooms at Golisano Children’s Hospital is Over-Capacity Compared to Rochester, New York
Even before their daughter was born in June, Aaron and Helen Chavez knew she would need heart surgery. She was expected to have an operation around 6 months of age.
When it became apparent in September that it would have to happen much sooner than expected, the Chavezes said, they endured an agonizing monthlong wait for a bed to open at their local children’s hospital so baby MJ could have the procedure she needed.
When it becomes clear that a child needs to be admitted, Stevens said, hospital officials find ways to open beds, and they try to do it so it doesn’t exhaust their nurses.
As of Friday, Golisano Children’s Hospital in Rochester, New York, the facility that treated the Chavezes’ daughter, was over capacity. Federal data shows that it has been consistently more full than the national average over the past few months. Golisano went from having 85% of its beds occupied in August to over 100% now.
Like many other hospitals across the country, Golisano has seen a sharp increase in children who are severely ill with RSV. Dr. Tim Stevens, the chief clinical officer, said 35% of the hospital’s current patients – excluding those in the neonatal intensive care unit – have RSV.
Source: https://www.cnn.com/2022/11/13/health/hospital-bed-shortage-heart-surgery-baby/index.html
MJ had a hole in her pumping chambers when she was born: How she fought through exhaustion, breastfeeding, and sore throats
Patients are sometimes kept in the emergency department to wait for a bed to open so that they can be admitted because of a lack of beds.
A hole between the pumping chambers of her heart is what MJ had when she was born. It is a very common problem in the United States, causing about 1 in every 24 infants, according to the US CDC.
The doctors could see the defect on the scans, but they didn’t know if it was big or small.
The blood coming out of her lungs mixed with the oxygen-poor blood coming from the rest of her body. She had a strained respiratory system, because there was too much blood getting into her lungs.
She had exhausted herself, even nursing or drinking from a bottle. “She would stop eating before she was full and before she got the calories that she needed,” Aaron said.
Helen claims that they didn’t worry because they were trying not to be anxious. “All those websites, they say sometimes you just have a sleepy baby, and it’s OK,” she said.
Source: https://www.cnn.com/2022/11/13/health/hospital-bed-shortage-heart-surgery-baby/index.html
MJ’s Bodies and Theoretical Hereditary Aspects: a Case Study of Feeding Issues at the Birth of an Abnormal Baby
Other signs that MJ might be hungry could be explained away, too. They thought her fussing was for colic. Their thought was that it might be a common skin condition called cradle cap, and that her hair was dry and flaky.
She called their pediatrician, who saw them the same day. A feeding tube was arranged by their cardiologist after the pediatrician mentioned it to him.
It’s normal for babies to lose weight after birth, especially if Mom got IV fluids during labor and delivery. They typically return to their birth weights by 2 to 3 weeks of age. After a few weeks, MJ regained her weight and it was back to her birth weight.
Her parents said the feeding issues really began to cause problems when she was between two and four weeks old.
They were told by the doctors to count the number of dirty and wet diapers she was consuming each day as a way of determining if she was eating enough. Her parents didn’t know it was not as much as she should have been.
One day, I held her and sat in our recliner. I looked down at her and I was like, ‘this baby looks puny. Like, she does not look like she feels good,’ ” Helen said.
“Once the feeding issues started, though, that I think that we all kind of realized that, OK, she’s probably not going to hit that six-month mark,” she says.
Now back home, she’s regained some of the vision and mobility she lost when she was sick. She is unable to sit up or roll over and may never be able to return to the feeding tube. A team of occupational and physical therapists comes over to help. She will make up for the time she missed, but it will take some work.
Source: https://www.cnn.com/2022/11/13/health/hospital-bed-shortage-heart-surgery-baby/index.html
What a kid can do to get out of an EKG? Aaron’s mom, Helen Chavez, laughs and crys when she hears
A grunt came from every breath that came. “She was fairly regularly sweating, no matter the ambient temperature in the room or whether we were holding her or not.”
The skin under her ribcage would pull when she drew a breath and it was a symptom of a suck in. Retractions are a sign that someone is working very hard to breathe.
“It looked like her chest was almost scooping under her lungs with each breath. The retractions were getting really bad. Around that point, they said this was going to increase in speed. We’re going to need to get her in for surgery soon,’ ” Aaron said.
At the end of September, she caught a cold after doctors put her on medication to drain excess fluid from her lungs.
Helen Chavez thinks that if the baby were healthy, she could have fought it off at home. But Helen was worried, so she took she MJ to the ER.
I was worried the surgery would take this kid crashing and burning before we could get her in. Helen told the doctor, who reassured her.
“It was the raggedness of her breathing and the noise. There was a weird sound coming from her. She was struggling for every breath, and that sounded like her fighting for.
“We were sitting in the ER, and every other kid in that pediatric ER was hacking, coughing, sneezing,” Helen said. Respiratory viruses hit Rochester very hard.
Source: https://www.cnn.com/2022/11/13/health/hospital-bed-shortage-heart-surgery-baby/index.html
A patient’s experience with pediatric heart surgery: A grateful mom and her daughter in Golisano Children’s Hospital (Kirchhoff, NY)
Helen said it was clear by the end of that visit that medications had done all they could do and that MJ would continue to get worse without the operation.
“The Golisano Children’s Hospital cardiology and cardiac surgery teams review the status of all pediatric patients who need heart surgery twice a week,” the hospital said in a statement to CNN. Once the surgery888-607-888-607- is needed, it is scheduled as quickly as possible based on the medical condition of the child. The current high census of pediatric inpatients at our hospital has not affected our ability to schedule non-elective pediatric cardiac surgeries in a timely way.”
Each of those are reviewed by our medical and surgical team to see if they are time-sensitive. Things that are immediate and urgent get done.
Aaron says the family has no complaints about the quality of care their daughter received, and they’re grateful to the entire team of doctors, nurses and other staff who treated their daughter.
“Once push came to shove, they definitely got her in, but the last four weeks were really, really harrowing,” Helen said. It was hard to watch your baby have a hard time breathing and know that there’s not much you can do.
On the morning of October 25th, the Chavezes brought MJ to the hospital to have the surgery. She would put synthetic material into her heart to patch the hole. Over time, the material would allow her own cells to grow on it and cover the defect.
The procedure could take up to 12 hours. It went fast and was finished in half that time. The surgeon told them that the operation had been a success.
Source: https://www.cnn.com/2022/11/13/health/hospital-bed-shortage-heart-surgery-baby/index.html
The Chavezes: Telling the Story of a Girl Who Smiles at a Baby and Has She Solved the Epidemic
“Just in that short amount of time, her skin had that pinkness and redness in places that you expect like the nose, and her fingers were proper pink,” he said. That color is supposed to come from a healthy baby. It was nice to see that.
“The baby that I have now, that returned from surgery, is constantly smiling at us. She has laughed three different times in the last couple of days. She is very close to a laugh. She seems completely different from the other baby she’s seen.
The Chavezes were nervous about sharing their story, but in the end, they decided it was important to shed light on the effects of the ongoing hospital bed shortage.
“Everybody we have told about the bed shortage, that we have told about the nurses and the staff and the doctors telling us how burnt-out and frustrated they are and how tired they are, everybody’s surprised,” Aaron said.
Everybody is shocked. Everybody thinks that this is over. The epidemic is over. Our healthcare system is back to normal. ‘What are you talking about? What shortages?’ “
After all, after nearly three years of a viral pandemic, doesn’t everyone already know what to do? If you are sick, stay home. There are viral illnesses that are running rampant so wear a mask in public places. Get vaccinated.
Ivy Grace Project: Protecting the Children of Left Hearts from Annihilation After the Birth of a Child with a Heart Defect
When Ivy was diagnosed with a heart defect on July 27th, South Carolina law effectively banned abortion after about six weeks.
The Hartles would not have an abortion for six days, but they would have to when the law was changed so it would not be permitted after 20 weeks. If the severity of Ivy’s hypoplastic left heart syndrome was confirmed, she called her doctors at Medical University of South Carolina to inquire if she could come in earlier for the second abortion.
The Hartles, who say they’ve always supported abortion rights, have now formed the Ivy Grace Project, named after their daughter who died, to educate the public and policy makers about fetal anomalies, which are often detected four or five months into a pregnancy – too late in states like South Carolina to terminate a pregnancy.
I am very sorry to hear about theHartle family and their child with a heart defect, said the primary sponsor of a Senate bill. However, I remain committed to protecting the lives of children from those who would choose to end those lives.”
Jill, 35, grew up in the town of Moncks Corner, South Carolina, going on retreats with her Christian youth group and attending sleepaway summer Bible camp with her twin sister.
Matt, 40, a cellarman at a local brewery, says that when he saw Jill walk into the reception, he turned to his mother and said, ” ‘There she is! That’s the one!’ ”
When she was excited that she might be pregnant, she went to the drugstore to get a test. At work at the salon, she was thrilled to see the positive result.
Matt felt different once he opened the box with the shoes and the test. “I immediately felt like a Dad and a father – my whole role now is to protect my family.”
At a routine ultrasound on July 27, when Jill was 18 weeks pregnant, their obstetrician came in the room and said, ” ‘her heart isn’t what we want it to look like,’ ” Jill remembers.
Pediatric heart doctors say patients often choose that option. According to Dr. Joseph Forbess, who is the surgical director for the Children’s Health Program at the University of Maryland Medical System, most parents choose to end the lives of babies with hypoplastic left heart syndrome.
Ivy could be carried by Jill to term. Their care team explained she might be stillborn, and if she was born alive, she would be given medicine for the pain caused by her failing heart, and could live for a few days at the most.
Ivy could have an open-heart surgery during her first week of life but her doctors warned that she wouldn’t survive it. The first open-heart procedure for babies with hypoplastic left heart syndrome888-607-3166888-607-888-607-3166 is888-607-3166, then at 6 months of age the child will have another open-heart procedure888-607-888-607-888-607-3166, then at 4 years old the child will have a third open-heart procedure These surgeries are not a cure, and even after the three procedures, these children may need a heart transplant, according to the US Centers for Disease Control and Prevention.
He said that they were talking about a child with a chronic medical condition that limits their cardiac output. “And they’re going to need a lot of high-level medical care their entire life.”
The goal was to provide all the information families needed to make their decision, according to the counselor who worked with the Hartles. The two people were thoughtful with everything.
She said her mother told her that the best thing to do for Ivy was to not have any pain or suffering.
“The best option to protect our daughter from pain and suffering was to send her to heaven,” Jill said. Sometimes healing does not happen when I pray for it. Sometimes the way they get healed is to be free in heaven.”
Source: https://www.cnn.com/2022/12/23/health/south-carolina-abortion-ivy-grace-project/index.html
The Hartles Stories: A South Carolina Senator’s Approach to Prohibiting Abortion After Two Weeks and a New Project to Make Sure I Had a Baby
Then on August 17, the state’s Supreme Court temporarily blocked the six-week ban and the law reverted to abortion being “prohibited when probable post-fertilization of unborn child is twenty or more weeks.”
The MUSC said that this was still a very volatile legal time and that the South Carolina Senate was actively pursuing new legislation.
At the end of the 20 week window on the law, no one wanted their patient to be halfway through and the law could potentially change, so the procedure was canceled.
CNN reached out to 16 South Carolina state legislators who sponsored abortion restrictions to get their response to the Hartles’ story, and three responded.
The bill that he co-sponsors allows parents to decide if they want to have a baby after the doctors say the baby is doomed to death because of a fetal abnormality. Adams did not respond to a CNN email asking him to be more specific about how he defined “fetal anomaly.”
Lindsey Graham, who introduced a bill in September that would ban abortion after fifteen weeks, did not respond to CNN’s email asking him for comment.
South Carolina and some of the other states with restrictive abortion laws make it difficult to locate clinics in other states that do allow abortion. That made the Hartles have a lot of work to do.
“Every two hours I have a new person coming into my salon thinking everything is great, asking me how I’m doing, am I excited, do I have a day care picked out,” Jill remembers.
Source: https://www.cnn.com/2022/12/23/health/south-carolina-abortion-ivy-grace-project/index.html
The Hartles and their daughter Ivy in South Carolina are Fighting For Their Rights: An Empirical Investigation of Fetal Anomalies
The Hartles had to figure out a way to pay for everything as they were enduring this “excruciating” pain. They said their insurance doesn’t cover out of state care, which costs about $7,800. Add in airline tickets, hotel, other travel expenses, and the cost of bringing Ivy’s remains back to South Carolina and they said the total cost was nearly $15,000 – money they would not have had to have paid if they’d been able to get the procedure in South Carolina.
The couple just bought a house and were worried about their expenses. Only at the very last minute, just a few days before their trip to Washington, did they find out that several foundations were pitching in to pay for nearly all of the expenses.
They went to Washington on September 11, nearly three weeks after making the decision to end the pregnancy. It was a three-day procedure to induce and deliver Ivy and afterward, her parents held her tiny body in a blanket with her name embroidered in green thread.
“I don’t remember coming home because I was in so much physical pain from giving birth, and I could have avoided all of that by just being at home,” Jill said. “It’s all of those things that people aren’t thinking about – of women being on airplanes, having excruciating pain from giving birth, then having to get home.”
“Those couple weeks, that travel, was just mentally brutal,” Matt said. “It was going to be tough either way, but it didn’t have to be like that. What’s going on? We were just put in such a tough position of not being able to be in (our) comfort zone during such a tough time.”
It made me so angry that my wife was so devastated, I had to take her to a different city because I was so angry about how she was treated, and how sad she was. I was not able to protect my family.
The Hartles say that they have learned from this experience, but that the stress of the whole process, including the part imposed on them by South Carolina legislators, might ruin less stable marriages.
They became activists after their experience. So far, they’ve created a short documentary about their experience, reached out to lawmakers, and spoken to the media in an effort to educate about fetal anomalies.
The decision to end a pregnancies is usually not made until the families are aware of a severe birth defect and that is why they want people to know.
Source: https://www.cnn.com/2022/12/23/health/south-carolina-abortion-ivy-grace-project/index.html
God’s Grace is Real, and Telling Stories is Powerful in the Strife for Abtressure Rights: A Message From Families Like the Hartles
“If you come from a place of non-judgment and compassion and you show God’s grace by loving another human no matter the decisions that they make, then that’s true Christianity in my opinion,” Jill said.
Stories from families like the Hartles are valuable tools in the fight for abortion rights in states like South Carolina, said Celinda Lake, a Democratic pollster and political strategist.
Molly Rivera, a spokesperson for Planned Parenthood South Atlantic, added that “people like Jill and other folks telling stories publicly can be so powerful.”