The family of a two-year-old girl hoping treatment could halve the size of a fluid-filled mass on her face.
Olivia Chicchon from Lodi, California, has a lymphatic malformation, a mass of small cysts that appear on the head or neck.
When doctors saw it in the womb, parents Ivan and Teresa Chicchon, both 32, were offered to end the pregnancy.
Instead, they opted for a complicated operation – called an EXIT procedure – to deliver Olivia.
Now they are talking to doctors about a treatment they have described as & # 39; groundbreaking & # 39 ;.
Sclerotherapy is a standard option for patients such as Olivia, but is considered better than surgery because it has fewer scars and less risk of returning the mass.
If Olivia can get it, her life can be changed before she grows up to realize that she & # 39; otherwise & # 39; than other children, her parents said.
Olivia Chicchon, two, was born with a lymphatic malformation, a mass that appears on the head or neck as a result of an abnormal formation of lymph vessels
When doctors saw it in the womb, parents Ivan and Teresa Chicchon, both 32, were offered to end their pregnancy. Presented at the hospital holding Olivia with the mass on her face
Mr. and Mrs. Chicchon hope that Olivia will be able to get treatment they have described as & # 39; groundbreaking & # 39; before she realizes that she & # 39; otherwise & # 39; than other children. Pictured, like a toddler
Mrs. Chicchon said: "We are all ready for the next step. Livie is beautiful as she is, she will always thrive no matter what.
& # 39; But at the same time, if there is treatment out there that is going to help her, we would rather do it now than wait and it will affect her more in the future.
& # 39; We recently said that we are ready to continue with Livie who is now receiving her treatment.
& # 39; We have met her doctors and we have not yet come to a definitive conclusion. & # 39;
WHAT IS A LYMPHATHIC MALFORMATION?
Lymphatic malformations, sometimes called cystic hygromas, are a collection of small cysts.
The cysts are filled with a clear liquid that resembles the liquid in a blister.
The cysts have no purpose and can cause problems. The walls of the cysts are quite thin and contain few blood vessels.
Cystic hygromas usually form the neck and armpits.
They occur when the lymph vessels do not form properly during the first few weeks of pregnancy.
Because they occur so early in pregnancies, they cannot be prevented.
Cystic hygromas can be detected during pregnancy scans.
Most are visible during birth or early childhood and appear as painless, translucent, soft nodules.
Treatment is not always required, but may include surgical removal or sclerotherapy of the injection.
Sclerotherapy causes an inflammatory response that shrinks cystic hygromas.
Cosmetic surgery can be performed at a later age to reduce scarring.
They affect up to one percent of newborns in the UK. Their US prevalence is unknown.
Source: Great Ormond Street Hospital
A lymphatic malformation, also known as cystic hygroma, is a collection of fluid-filled cavities, known as cysts, that result from malformation in the lymphatic system – a network of blood vessels in the body that make up the immune system.
The surgery that the family hopes a lot is sclerotherapy, an injection that is used to treat lymphatic malformations and varicose veins.
Medicine is injected directly into the mass with a needle that irritates and induces deformation and causes swelling that will eventually disappear.
Sclerotherapy is currently considered to be the best treatment option for lymphatic malformations, because it entails lower risk than open surgery, causes no scarring and the masses have fewer chances of return.
While Olivia grew up, Mr. and Mrs. Chicchon had the challenge of shielding Olivia from curious children.
Mr. Chicchon said: & She now knows when children say something and have fun. She knows what's going on.
& # 39; So it's becoming more and more of a challenge. & # 39;
Mrs. Chicchon added: & When we go out in public, people naturally stare. Adults, children – they stare because it is different.
& # 39; I think it's important to explain to other children exactly what it is. There are children who try to touch it aggressively and it is exactly how do you respond? & # 39;
When Mr. and Mrs. Chicchon received a first diagnosis, they were given the opportunity to end the pregnancy.
Doctors predicted that Olivia would have no quality of life in the future.
If Olivia can get it, her life can be changed before she grows up to realize that she & # 39; otherwise & # 39; than other children, her parents said. Depicted in her home in California
Lymphatic malformations occur if the lymphatic vessels do not form properly during the first few weeks of pregnancy. Because they occur so early in pregnancies, they cannot be prevented. Pictured, an echo from Olivia
Doctors abruptly suggested a termination of pregnancy, according to Mr. and Mrs. Chicchon. But they refused and instead Olivia had delivered via an EXIT procedure. Pictured, in the hospital after needing help
Mrs. Chicchon could not see her daughter for 15 hours after birth
Mr. Chicchon said: “The doctors just told us abruptly that she had a teratoma [a type of tumor that could be cancer] and that we should collect our thoughts and consider options for termination.
& # 39; We really didn't know if she would survive the birth.
& # 39; Fortunately we had a second opinion and doctors there said they had a crazy surgery that Olivia could deliver safely.
& # 39; Give her the chance to be born, no guarantees that she would survive, but give her that chance. & # 39;
Olivia was delivered via an EXIT procedure, similar to a caesarean section, that is used to give babies who are at risk of compressing their airways due to circumstances such as Olivia & # 39; s.
Mrs. Chicchon said: “When she was born, I didn't see her for nearly 15 hours. But we all fought and we were allowed to bring our little girl home. & # 39;
Mr. and Mrs. Chicchon said they were happy to receive a second opinion from doctors who could perform a birth. Pictured, Olivia as a baby
Olivia started taking ballet lessons earlier this year, which has strengthened her confidence
The family is waiting for the news about Olivia's treatment, but hopes they can get slerotherapy because it entails fewer risks than open surgery, does not cause scars and does not return the masses. In the photo, at their home together
Now the family is waiting for the news about the treatment with which Olivia can continue.
Mr. Chicchon said: & # 39; The doctors need an updated MRI and we can go from there, whether it is sclerotherapy or a larger operation.
& # 39; The sclerotherapy is more conventional, but it is groundbreaking in the sense that they do everything that is guided through a needle. & # 39;
The treatment would be administered slowly over a period of approximately three months, with the medication amount of each injection adjusted to the needs of Olivia.
Olivia has had a rocky start to life after a few health problems. A few weeks after she went home, she had two hernias that needed immediate treatment.
Mr. and Mrs. Chicchon also have to be careful that Olivia falls over and ends up at her mass, which has happened before.
The day after her fall, she stopped eating and drinking and her speech became unclear. She was brought to the emergency room where she received medication to control the swelling.
But the parents are happy that Olivia is developing a positive attitude.
Mrs. Chicchon said: & She is just a great little girl, smart, beautiful, active – she brings so much joy to everyone who knows her.
& # 39; Being born differently is ok, everyone is different and no one is perfect. & # 39;
Mr. Chicchon added: & I want her to know that she is beautiful and that it is all good. That is the most important thing for me in the future. & # 39;
The family runs theirs Instagram account where they would like to raise awareness of her condition online and help other families who might be on a similar journey.
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