10:27 am Daughter’s health problems inspire mom to raise awareness about heart defects
By Ashley Rader
From all outward appearances, Jayma Ollis is a healthy, average 18-month-old little girl. She enjoys playing with her toys and her older brother and sister. She loves it when her family comes over to see her and when her little dog comes running across the floor to greet her. What isn’t that noticeable about Jayma is that she was born with four congenital heart defects. She has had surgical treatment for two of them and is likely facing at least one more surgery when she is four to repair a hole in her heart that was caused by one of the congenital heart defects.
Photo by Brandon Hicks - Ashley Ollis decided that she wanted to discuss her daughter’s heart defects because the public needs a better awareness of such conditions. “It happens to anybody and everybody,” she said. “You think you have had all the prenatal care and you have had all the tests and that everything is fine, but science isn’t perfect.”
Jayma’s mother, Ashley Ollis, said there were no signs during the pregnancy that anything was wrong with Jayma. She said she underwent three ultrasounds but nothing was ever picked up on any of them to signal a problem.
Photo by Brandon Hicks - Jayma Ollis was born with four congenital heart defects. She has had surgical treatment for two of them and is likely facing at least one more surgery when she is four to repair a hole in her heart that was caused by one of the congenital heart defects.
When Jayma was only a day old they noticed that she wasn’t using the bathroom like she should have been. Her pediatrician came in and checked on her. Because she was delivered by a Cesarean section, Ashley was still in the hospital with her. Her doctor heard a heart murmur and ordered an EKG, which came back abnormal. The next day they did an echocardiogram on her which showed the coarctation of her aorta and Jayma was transferred to the Neonatal Intensive Care Unit.
Photo by Brandon Hicks - From outward appearances, no one would ever suspect that Jayma Ollis is anything other than an average little girl. Born with four heart defects, she has already undergone two surgeries and will likely undergo another surgery when she is around four years old to close the hole in the Atrial Septal Defect, or ASD.
“I remember when they first came to tell me something was wrong with her,” Ashley recalled. “They came early in the morning, it was like 6 or 7 in the morning. I sat and argued with her. I said ‘No, it was just this or it was just that.’ She is OK.”
Ashley said that at the beginning the doctors just noted the coarctation of the aorta. This is a narrowing of the artery that decreases the blood flow to the body and increases pressure in the heart. Jayma was later diagnosed with having Patent Ductus Arteriosus (PDA), Bicuspid Aortic Valve (BAV) and Atrial Septal Defect (ASD).
PDA is an extra passageway between the pulmonary artery and the aorta. This is always open in a fetus to allow for extra blood flow to the baby and normally closes within 10 days after birth. When it doesn’t close on its own, surgery is needed to do that. BAV is when two of the three cusps of the aortic valve are fused together. This means the valve can’t open all the way and blood flow is decreased. ASD is holes in the inner walls of the heart that allows extra blood flow between the two upper chambers of the heart.
Jayma was transferred to Vanderbilt University Medical Center to have surgery on the coarctation. When she got there it was discovered she also had Group B strep and had to go through 13 days of antibiotics. Ashley explained that mothers are screened for Group B strep while pregnant and are given antibiotics during labor so it is not passed on to the baby. However, for some reason she tested negative and they did not know that treatment was necessary. After the antibiotics, Jayma underwent surgery for the coarctation and the PDA. She was in Nashville for 28 days and was able to come home when she was one month old.
Ashley stayed with Jayma for her entire stay at Vanderbilt. Scott, her husband of nine years, was able to come down and stay for a week but had to return home to go back to work and to care for the couple’s other two children.
“That was really hard on him,” Ashley said. “We thought it was just the one defect and that it would be simple to fix. It ended up being four problems and the wait on the surgery caused her more problems. It caused her heart function to be bad and it was really hard on him because he felt he had failed her. He felt that if he had been there every day he could have changed some of the things that happened to her but I tell him it wouldn’t have changed anything. He wanted to protect her. It was still really hard and it still is hard; the what-ifs, that is the scariest part, not knowing if or when something is going to happen.”
When Jayma was sent home she still had a feeding tube because she wouldn’t eat and was on three heart medicines. Jayma is not currently on any medications for her condition. Ashley added that at that time her 79-year-old grandfather was taking two of the same medications that Jayma was on. When she was four months old Jayma had occupational therapy for almost four months because she had oral aversions because of all the medications and treatments and didn’t like to talk or eat. She also had to have speech therapy. She also visits a dietician to make sure she is getting the proper nutrition. Jayma was classified as Failure to Thrive because of her slow growth in gaining weight. Ashley said she has just recently started to place on a growth chart.
“I asked the cardiologist when she first went and looked at her how did this happen,” Ashley said. “She said the way your heart forms, it develops on itself and it is the first thing to develop. She said with the way it forms we are all lucky we don’t have heart problems. You have a tube that develops all the chambers and all the valves and everything so it could happen to everybody.”
Jayma will have to have surgery again, likely when she is around four years old, to close the hole in the ASD. This could be the last surgery for her or she might have more due to the defects with the aortic valve. “That causes her whole aorta to not be normal,” Ashley said. “It could aneurysm, dilation, rupture, there are so many things that could happen because of the valve, so really anything and everything could happen at any time.”
Because of the uncertainty of Jayma’s condition, Ashley said she has been as upfront as possible about it with her other two children; daughter Blakelee, who is eight and son Jackson who is five. She said she explained to Blakelee what the signs were if Jayma ever started to have problems and that she should tell an adult right away who could get help. Because Jackson is younger, she said he knows his sister is sick but doesn’t really understand all of the details.
Because children with congenital heart defects often don’t look or act sick, some people are hesitant to believe that something is wrong with the child when the parents say that there is. Also, because there can be no strong outward signs that something is wrong, the condition can go undetected for many years.
“The scariest part of it is that you would never know,” Ashley said. “You would never be able to tell her from a normal, healthy child. They don’t show that they are sick. A Facebook status that I really like is, “CHD (Congenital Heart Defects) is cruel. It mocks us by allowing our seriously ill children to look perfectly healthy. Our children often do not look sick. There are no tell-tell signs. This allows others who do not understand to trivialize what we are going through. Most CHD children fight their battles at home not always in a hospital. You don’t know because they don’t look or act sick.”
She advised parents to be on the lookout for any of the symptoms of CHD, such as rapid or difficulty breathing and blue coloring around the fingernails or the mouth. An affect child also tires easily, suffers from poor circulation and exhibits sweating while eating or just sweating in general. She said if they exhibit those signs they should be checked out by a doctor and the parent should ask for a pulse oximetry or a “pulse ox” test. She said any reading below a 95 indicates something is wrong.
She also advises parents to be open with what they are facing and to talk about it. She said she was told be a family member not to discuss Jayma’s problems, but that suggestion only made her want to discuss her daughter’s condition even more.
“It made me think,” Ashley said. ”People need to know and understand that it happens. It happens to anybody and everybody. You think you have had all the prenatal care and you have had all the tests and that everything is fine, but science isn’t perfect.”
While Jayma’s health future is unclear, Ashley is confident she will be all right. Jayma is off of all her heart medications and is eating and growing normally for a toddler. She is in the middle of the longest stretch without seeing a cardiologist. If she can make it the next few weeks without a visit, then it will be six months since she has had to visit that doctor.
“She is obviously not the only child in the area and she is not the worst case or the simplest case,” Ashley said. “There are so many children that have it and people in general just don’t know. There are far worse defects than what she is looking at. We don’t know what will happen. It is hard to deal with as a parent because you want to protect your child but you don’t know what has happened. She will need surgical interventions throughout her life. I really think the outcome will be fine.”
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