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Children's Hospital of Philadelphia
Surgeons hold the tiny hand of a fetus during a fetal surgery.
By Joseph Brownstein
MyHealthNewsDaily.com
On Nov. 7, 2006, Mary Kelly went for a routine pregnancy ultrasound. Three days later, she and her unborn daughter had become pioneers.
Kelly and her daughter, Addison, now 5 years old, were the second mother and child to undergo a fetal surgery procedure where doctors removed a tumor between the heart and lungs that was causing heart failure and fetal hydrops — a condition where Addison was taking on so much fluid that she would not likely survive.
Over those three days, Kelly underwent tests and met with doctors to discuss her options. With her pregnancy only 26 weeks along, those options included monitoring the pregnancy and waiting, or inducing labor — and in both of those cases, the baby would likely die.
Courtesy: Kelly Familly
The Kelly Family today. Addison, second from left, is now 5.
Kelly and her husband opted for a third choice, fetal surgery, which gave their daughter a 50 percent chance of surviving. The surgeons planned to place the fetus back in Kelly's uterus, to allow her to develop for 10 more weeks before delivery, Kelly said.
"But that's not how it went," Kelly said.
While the surgery was successful, a few days later, Mary Kelly went into preterm labor. Addison Hope Kelly was born almost three months premature.
Although Addison faced a multitude of challenges in her young life, and did not even come home from the hospital until she was almost a year old, she will begin kindergarten this fall.
"You look at her, and you would not know she went through any of this," Mary Kelly told MyHealthNewsDaily. Addison needs ongoing observation and requires a machine to ensure she keeps breathing at night, but she has "nothing terrible, which is truly amazing," Kelly said.
Addison's survival and the challenges she has faced represent both the promise of fetal surgery, and the ways it has to go.
The tiniest patients
The first ever open-fetal surgery was performed in 1981, at the University of California, San Francisco (UCSF), to correct an obstructed bladder.
Today, about 150 fetal surgeries are performed yearly at The Children's Hospital of Philadelphia (CHOP), where Kelly was treated and which has the largest volume of these surgeries in the nation, said Dr. Scott Adzick, the surgeon-in-chief.
Adzick was among the researchers who contributed to the development of fetal surgery in the 1980s. Since then, fetal surgeons have removed tumors, repaired holes in the diaphragm affecting lung development and treated conditions that threaten twin pregnancies.
"The most successful surgeries have had to do with treatment of twins that share blood through a common placenta in an uneven fashion," said Dr. Ruben Quintero, director of the Fetal Therapy Center at Jackson Memorial Hospital in Florida.
Quintero performs only minimally invasive, endoscopic surgeries, and has developed techniques for the procedures, which involve making a quarter-inch incision while a woman is typically under local anesthesia. These procedures reduce the risks of open procedures, which are more likely to bring infections, and the side effects of general anesthesia, which can include nausea, vomiting and not waking up.
Because of these risks, there is a limit to when fetal surgery should be done.
"The surgeries that are done in utero are justified only when the life of the fetus is at risk if surgery is not undertaken, or where severe damage to the fetus can occur if surgery is not undertaken," Quintero said.
He noted, however, that it can also be justified for conditions that carry serious or long-term health consequences, such as the surgeries some centers perform to treat spina bifida, a condition where the spine is left partly exposed.
"Although [spina bifida] typically is not a lethal condition, it may result in significant complications and surgeries after birth," he said.
Last year Adzick, along with colleagues at UCSF and Vanderbilt University, published a study that compared repairing myelomeningocele — the most severe form of spina bifida — while the babies were in the womb, to the traditional approach of repairing after birth.
While the results showed that mothers and children faced risks from the surgery, the trial was halted early because it overwhelmingly showed that fetal surgery produced better outcomes than repair after birth.
The future of fetal surgery
Efforts under way in fetal surgery involve using less invasive or earlier treatments. One hope is that procedures done today for fetuses who are twentysome weeks old could be done sooner, with greater benefit.
Dr. Alan Flake, director of CHOP’s Center for Fetal Research, is working with stem cells from adult bone marrow to develop a treatment for the blood disorder sickle-cell anemia that could be administered 12 to 14 weeks into pregnancy. Clinical trials of the therapy should begin in a year or two.
In the longer term, Adzick said, researchers are looking at treating other single-gene disorders that can be diagnosed early in pregnancy.
Finally, Adzick said more work is being done for spina bifida. A tissue-engineering technique could be used to protect the spinal cord opening, essentially working as a "band-aid" early on in pregnancy, with repair being done after birth.
But that research needs more rigorous lab testing before being applied to patients.
While fetal surgery has had some dramatic successes, it is not without risks, which can include infection from the surgery, preterm birth or death for the mother or fetus.
That's why part of all lines of fetal surgery research include asking, "Can that be done with tissue engineering, can that be done in some other way that's not a fetal surgery?" said Lori Howell, executive director of CHOP's Center for Fetal Diagnosis and Treatment.
When fetal surgeries began, Howell said, other physicians were skeptical that opening up a pregnant woman to operate on the baby was necessary or advisable.
With the improvements coming in the field, the hope is that someday, many of the operations needed today won't be.
- 11 Big Fat Pregnancy Myths
- 7 Diseases You Can Learn About From a Genetic Test
- 10 Ways to Promote Kids' Healthy Eating Habits
Researchers have found that prenatal surgery can reduce complications from spina bifida, a common birth defect. NBC's Chief Science Correspondent Robert Bazell reports.
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It probably cost a million dollars to keep the baby in the hospital for a year. A case in Denver where the baby was born with no brain, docs knew it wouldn't live. Parents were young, could have tried again, but said "try at any cost to save our baby". $1 million later, baby died, parents had no insurance, paid not a nickel. Cost was to the taxpayers. Hmmm.
@Mozzie-6oo,
What gives you the right to decide if a life is worth saving? Maybe you would have chosen differently, but for these parents, they chose to do what they thought was right. Perhaps you could show compassion for the parents over a very agonizing decision, instead of passing judgement.
You have misinterpreted my post. I was not passing judgement, merely stating an observation of another situation. No one can live without a brain - but maybe you're different.
Advances in Medicine within my lifetime are simply amazing, and I'm sure that things yet to come will be equally...nothing but highest praise for the doctors and the parents for doing what was neccessary to save the life of this little girl...
But, my question is, how long can it be now...before the Hollywood elite are having cosmetic surgery performed on their unborn children
so Mozzie, what is the line before you pull the plug? I can tell you from personal experience it is not a choice that you want to be given. 501 days in ICU for my daughter. she is now 15 with few problems. should I tell her the 3 million dollars that the insurance company and I spent shouldn't have been spent?
This story said nothing about the family being on aid so cost shouldn't come into it.
Lt.T I completely agree with you. When I was 26 weeks pregnant, my son was diagnosed with a diaphragmatic hernia. We were also given the option of placing him on supportive measures, but chose not to, due to the fact that he was in an incredible amount of pain. I held him and he died in my arms (while receiving morphine for comfort) I made a different choice, but that does not make my choice wrong. I wish mothers would not judge others. It is an agonizing decision, and clearly Mozzie has been blessed as she has not had to make the difficult choice.
We are talking about unborn people here. As hard as it may be, some fetuses are just not meant to be born-and for good reason-they have defects. Mother nature decides who lives and who dies, until we interfere. Bringing fetuses into the world with defects and deformities that are often genetic we are perpetuating the very conditions Mother Nature, in her wisdom, eliminates from the gene pool. And we spend a lot of money doing it that already living, breathing human beings could use. And don't say "well, insurance paid for it all". Why do you think insurance premiums are so high for everyone else and so many people go without needed health care because they can't afford it? Somebody pays, just not the parents.
There's one problem with that. We were unable to "interfere" regarding ill or handicapped fetuses until we had the technology to do so in treating them, or at least trying to. So, if Mother Nature decides who lives and dies in order to remove genetic anamolies and thus preventing their perpetuation, then why didn't they all vanish before we were able to "interfere?" With Mother Nature being allowed to do her thing, we should all be perfect specimens.
I am not making any judgements about this family, merely relaying one instance (I'm sure there are many others) where the doctors could have let this Denver baby - who had no possible chance of surviving without a brain - become an angel but for certain inevitable adverse publicity the next day. "Docs kill baby", etc. Just because we have the technology to save every newborn - regardless of long-term survival odds - does it mean we should? At present, there is no answer to this question.
How many $3 million payouts for hospital care are there to go around until the limit is reached?
Mozzie, often times, these procedures are covered by private insurance--and those that are not are typically covered by the state. As a society, I believe that we have a responsibility to protect our most vulnerable... but that's just me...
The real question to ask is why did it cost $3 million dollars in the attempt to keep the infant alive? Maybe if we spoke up and did something about the gouging and greedy medical industrial complex we wouldn't have to be so concerned about the huge amount of moola. How many BMW's, Aspen vacation homes and private jets do high-call surgeons and hospital CEO's need?
The medical professionals aren't raking in the dough as much as you might think. Medical malpractice insurance is extremely costly due to the litigious society we live in; plus, hospital costs are enormous because of the (vast numbers of) uninsured who pay nothing. Someone has to pick up the slack and since hospitals cannot afford to do this, it lies with those who can afford to pay.
They aren't? Really? Every "medical professional" I know rakes in more dough than all of Dunkin Donuts outlets put together. I have relatives, friends and aquaitances who are "medical professionals" (doctors; surgeons; etc.) - they're doing very nicely. They have and can afford all the toys they want for themselves and their families. Not one of them ever had to wonder which bill to pay to see if they should eat or keep the heat on. They all eat in the finest restaurants and pay the heat (or air-conditioning) for their several houses scattered throughout the country. One even has a "vacation" home in London, where he and his family spend three weeks out of the year.
Well, considering what "medical professionals" charge for even the smallest thing, they had better get it perfectly right the first time. If they can't or don't, then they deserve to be sued until their last Gucci and Christian Dior possessions are taken from them. There's a reason why malpractice insurance is so high - it's because the rate of malpractice amongst "medical professionals" is so high. It's their own fault that they can't do it right and have to pay for it. They have no right to shove the cost of their incompetence upon the rest of us.
Maybe if hospitals didn't charge so much, they wouldn't have to worry about not being to "afford" to pay for those who can't afford their gouging prices. When I was born, in the late '50's, the entire bill my dad had to pay (his factory gave "hospitalization" insurance and that was for only the most extraordinary situation) was $250. You read that right. For that, my mom was wheeled into a delivery room, I got popped out, and both of us stayed in the hospital for five days. My dad went to the bank and withdrew $250 in cash and paid it at the hospital counter. Yes, I know there's taking into account such things as inflation, but what would $250 for a delivery cost today? Not the tens-of-thousands now demanded by hospitals. If they made their services affordable today, as they did back then, they wouldn't have to worry about "picking up the slack." The medical industrial complex today is all about greed for the 1%. Charging $3,000,000 dollars for one child is outrageous, disgusting, immoral and unethical. And if the "medical professionals" say it's necessary because of having to "pick up the slack," don't forget, those "medical professionals" still have their BMW's, Aspen vacation homes and private jets.
Current medical science puts into question what abortion really is. Clearly, we now know how to perform life saving surgery on a fetus. The record of that operation will follow that person for their entire life as a required (government regulations) medical record. Yet, some people believe that it is moral to kill this person. When does it end? Abortion up to age 200!
If these things are not considered people by some then why should we even bother with this surgery?
It is interesting, isn't it? Since these...whatevers...are not considered people or humans or even life, how can surgery be performed on them? They're not "life," so no surgery can be performed on something that is not "life." I think this whole fetal surgery thing is just another attempt by anti-choice fanatics to convince real people that there's a person, or a human, or a life before the umbilical cord is cut. One day, you perform surgery on these blobs of tissue, and the next day we protect them and that will harm "women's health" when they get the vapors. We must protect a woman's right to choose reproductive health care by banning these insidious fetal surgeries. When a woman discovers her blob of tissue is "defective" and can be "cured" by fetal surgery, she must not be allowed to follow that course. If she does, she gives credence that this blob of tissue might be more than that and the next thing you know a healthy woman with a healthy blob of tissue she doesn't want won't be able to get rid of it.
I do believe i saw fingers and nails.. that blob of tissue has a heart that is pumping blood.. to keep it ALIVE. So if this baby developed the tumor after she was born it would be ok to perform surgery? What about all the children who develop cancer? What a bunch of closed minded people. Sometimes it is unfortunate that people like you have freedom of speech.