Kid with a rare heart condition inspires her caring mum
Natalie Ollivierre endures many sleepless nights, as she stays up listening to her four-year-old daughter Saniyah’s heartbeat.
She spends many hours adoring her gift from God and wondering how much longer she has with her before the rage of a serious heart condition snaps her from the comfort and protection of her bosom.
Though the journey for Natalie thus far has been painful, and she has been told of the chances of the worst coming, she yet demonstrates that her tender care will never cease for the child she did bear.
Saniyah, a beautiful and carefree toddler, who loves to run, dance, laugh and create imaginary friends every day of her life, is grappling with hypoplastic left heart syndrome (HLHS) –– patent ductus arteriosus and ventricular septal defect.
However, Saniyah’s ability to do the things she enjoys is somewhat limited, as she copes with this rare condition in which the left ventricle of her heart is severely underdeveloped. She often experiences heavy breathing and a rapid heart rate, being unable to walk long distances; has a low immune system; and must be under consistent supportive care.
Saniyah even spends extended periods at the Queen Elizabeth Hospital whenever her body slips into heart failure.
Natalie, bravely speaking about her daughter’s condition during a recent interview with Barbados TODAY, said she was doing her best to use love, compassion and tender care to replace the missing piece of Saniyah’s heart.
“We have to bear in mind that at any point she could start to deteriorate,” the loving mother said, “so we just deal with it. I have come to deal with it and I have been through the whole grieving process. I have support of friends and support of family, and support of the professionals who constantly check in on me.
“Once, [Saniyah] had a very bad heart failure and was on the drips and everything; it wasn’t easy. But I know that I have to be strong for her, and she knows that whenever she has any pain or difficulties, I am there holding her hand. I am the ‘doctor’. So when she is sick, whether I am sick or anything, I am there. When she is in the hospital, I am there.
“Sometimes it is very hard for me, especially when she is on oxygen and the heart monitor, and stuff. I pray a lot and rely on my social work skills to deal with the grief.
“At first, you were shocked and you would be crying and angry and whatever; but I made peace with God and I said whatever happens, He knows best,” the 28-year-old said in strong voice.
Shaking her head, recalling how the distressing news was broken within days of her becoming a mum, after doctors had carried out numerous tests on noticing her bundle of joy was not breathing as she should, Natalie said that amidst the tears that flowed down her cheeks for days she held on to faith.
The doctors had informed her that because of the heart condition, Saniyah might not make it past the initial stages of her life.
“But I always make sure I do what I need to do for her. It is challenging at times, but I do it,” Natalie declared.
The mum added: “I make sure she has everything she is supposed to. It is very expensive at times, but I make sure I get whatever she has to. I monitor her; I make sure she is not overworked and she is not in an environment where she could easily get sick –– which is difficult, because you know how it works when you catch the vans.
“If she becomes dehydrated or picks up an infection, I know what to expect –– and I do a lot of research.”
Surgery can be performed on Saniyah’s heart, but Natalie, who has thoroughly researched the condition, said she opted not to go in that direction because she could not afford the multimillion-dollar bill; further, she is not willing to take the risk.
She said the toddler would require at least eight surgeries, done at a select few hospitals in the United States because of the technicality and precision of the procedures. And the down payment is US250,000.
“There is a high mortality rate and then the after-care alone is very taxing . . . . It is best to just leave her as she is for now.”
Natalie revealed that seeing her offspring lying in a hospital bed was most painful process –– though doctors were usually cooperative, sympathetic and understanding.
It is discomfiting too for Saniyah; doctors having to check on her “every five minutes” and “pulling this and pulling that”.
“And then she can’t eat because they starve her so nothing would go into the lungs and cause her to suffocate or anything like that. You know how uncomfortable it is when you’re hot and sweaty, and you can’t get anything to drink . . . . Then she would find creative ways . . . like push her hand in a bowl of water, talking about she’s hot; or [indicate] she wants to brush her teeth, so she could wash out her mouth but [in fact] swallow the water.”
Despite the struggles, Natalie is thankful that Saniyah attends the Children’s Development Centre where she is progressing within her confines. She said her child was very observant, “sees well and has a good sense of hearing, although at times she conveniently does not hear”.
“Her memory is good, although sometimes you would have challenges getting her to sit down and concentrate on doing something. And if she is not feeling well, it makes no sense working with her. She is underweight because the metabolism is very high . . . and, well, short. She likes to look out for people. She likes the elderly. She likes to comb my grandmother’s hair,” mum Natalie said.
Nurturing a sick child requires much patience and time, and doing this while unemployed makes it even more challenging, when added to this must be the mandatory speech therapy and that special diet for persons like Saniyah.
To reach out to other mothers facing a similar situation, Natalie, who graduated from the University of the West Indies with a degree in social work –– acquired while working and taking her daughter to sometimes two or three appointments a week –– is hoping to someday open a nursery for children with special needs.
“It is very difficult because right now I am not working . . . . But even job-wise, sometimes people frown on the fact that I would have to leave at a moment’s notice. But usually I would work hard, come in extra early, work through lunch and leave late because you know you still have to do what’s best for the business.
“Once in a while somebody would chip in; but it’s hard when you have to buy the additional stuff for [Saniyah’s diet] with extra calories and extra proteins. We would get her vitamins and heart medicine from the hospital. But things like goat’s milk is hard to get.”
Natalie has some advice.
“When the doctors say your child may soon take its last breath, make sure you are there with your child. And you tell them how much you love them. Hug them; kiss them; and talk to them. When they are up, freeze those moments with many pictures –– and do not forget to take some personal time away from the challenge and stress.”
She sadly adds: “Sometimes you want to plan, but the future is uncertain; and I have learnt that it makes no sense planning with that young lady at all. For my father’s birthday we were supposed to be going out, but we were at the hospital on the same day.
“I would see children running at sports and I would be like I don’t even know if I would actually see Saniyah participating. I hear other people talking about college and grandchildren, but I don’t even know if I would be able to have a grandchild from her, because if she gets to that age she could have a child, then the complications for her and that child would be on –– and it would be a miracle if they pulled through.”
Before becoming a mother, Natalie heard stories about a parent being their child’s best friend. Such a story could not be truer now for her, especially when she hears her daughter’s tiny voice telling her, ‘Mummy, you are my best friend’.
“. . . People tell me Saniyah is an inspiration to them. I tell them she is an inspiration to me too. A lot of things that she went through and I saw first-hand, I am like ‘I could not do that’. She is a very strong young lady.
“I have come to grips with the stituation, and I just try to make sure that when it is all over that I don’t regret I didn’t get to do this or I didn’t get to do that.
“The surgery is a big toss-up . . . . Sometimes I wonder how is she would get this surgery; how we would get the money . . . . Then, four to six surgeries are a lot!
“Some surgeons from overseas are saying it is torture of the child. So, yes, I may want to extend the life of my daughter; but I may shorten it –– or I might make it even more painful than it already is,” she suggested.