I was fortunate to work in the Communication Department of the Spanish Federation of Spina Bifida and Hydrocephalus Associations (FEBHI) where I met wonderful children, parents and young people with this serious congenital malformation.
So today, National Spina Bifida Day, I wanted to give the floor to one of those mothers. Is called Lourdes Torres lives in Madrid, and her seven-year-old daughter Ana has Spina Bifida and Hydrocephalus (EBH).
She tells us what the diagnosis means for parents and how Over time you can lead a normalized and happy life, like that of other families, with small differences.
An unknown malformation
Despite its severity, little is said about this malformation located in the spinal cord and that affects the central nervous system (CNS), the musculoskeletal system and the genitourinary system.
Lourdes wants to give voice to this ignorance, as he explains “It is vital to have information when it is discovered during pregnancy and you feel disconcerted. It helped me a lot to be able to talk to the mother of a child with EB, who explained to me firsthand the special needs our children have and how we can help them. "
“My pregnancy was long desired, so when we went to the ultrasound of the five months to reveal the sex of our baby, they discovered that something was wrong. I remember that the doctor told us not to be scared, but that the baby had Spina Bifida and I answered honestly that he could not scare me because he did not know what it was. ”
In Babies and more The baby who was born twice: had fetal surgery to correct his spina bifida before birthAnd the most curious and what irritates him most, Lourdes explains, is that after checking where the malformation was, with contrast ultrasound only gave him the option to abort.
"I am Catholic and my husband and I were clear that we were going to pull forward so of course we didn't even consider it."
He also acknowledges that, from that moment, the support of the specialists was total, both in the private center where they were carrying their 'normal' pregnancy and in the La Paz Hospital, where they came after verifying that something was not right in their baby, and where they have always taken care of and take care of Ana.
“I was struck by how wrong I was about Health. I had the idea that in a private hospital they would have more advanced technology and therefore the medical follow-up would be of better quality, and I discovered that the most prepared professionals are in the public: with much older appliances they immediately located where the EB was in my daughter, while with more modern appliances, they were not capable in private. ”
“The reviews are no longer idyllic”
"Despite how hard the tests may be, the uncertainty, the repeated interventions my daughter has had to go through, I do not change it for anything, neither then nor now."
This is how blunt Ana's mother is, who says that it is true that Your world changes when you get such a serious diagnosis in what should be the happiest time of your life, pregnancy, and that you no longer look forward to the following gestation checks, but still ensures:
"I am very happy with her by my side."He recognizes that his daughter's first years have been different and that he has not experienced the same emotion as other mothers with healthy newborns:
“My baby had hydrocephalus, so as soon as the doctors thought she could be born, they scheduled a C-section and on the same day they took her to the operating room. And since that day, there have been many more interventions. That's why, since he was born, our only concern has been and is that he can overcome everything, instead of enjoying himself like other parents. ”
"I am optimistic and I know that what has happened to Ana is a lottery"
Lourdes recalls that when she and her husband were diagnosed, they began to dive online to learn about Spina Bifida and that they had long conversations about what their life would be like. But they always knew they would get ahead.
“I think that at one time or another life gives us a stir and that it is not always rosy. We were tested seven years ago, but now the worst is over. ”
He assures that they have normalized the situation and in these moments of his life it is not as hard as they initially thought. He knows that it could happen to any couple, since they were not a risk group and even had months before getting pregnant taking folic acid, on the recommendation of the doctor: "Life is a lottery, and it was Ana's turn."
In Babies and more Folic acid in pregnancy: when to start taking it?Mind you, admit that these seven years have been more bearable because they have had a lot of support from the family, From the first moment.
And how is Ana?
Lourdes stopped working to always be next to his daughter, "Since I needed continued help, many checkups and hospitalizations". In return, her father began to spend more hours at work to be able to meet all the expenses involved in a girl with Spina Bifida and Hydrocephalus.
Ana is affected at the motor level: she walks with the help of a walker at home and in a wheelchair for long trips. And the sphincter control is also affected.
But his cognitive level is absolutely normal. So he attends an adapted motor college, which has a speech therapist, support teacher and physio. It also has technicians who change the diaper or know how to probe if necessary.
For the rest, at the academic level it goes at the same pace as its peers.
In addition, Ana attends the Madrid Association of Spina Bifida (AMEB), since she was born:
“For us it has been a great support. Especially at the beginning you have many doubts and they solve them very calmly. Since Ana left the hospital for the first time, we go to rehab every week. ”
Lourdes explains that working with Ana is slow, but improvements are seen. He assures that it also helps to have a multidisciplinary team at Hospital La Paz in the service of 'Pediatrics of Complex Children', who coordinate all of Ana's needs without having to be a specialist specialist: "I just have to call or go saying that something does not fit in Ana and they attend me at the moment."
“Ana is very autonomous and has very clear ideas”
Her most immediate goal is ** to be able to walk on her own **, with the help of some crutches and to be totally autonomous tomorrow to work as a children's teacher, doctor and dancer, who are her favorite professions. And for that they work at AMEB, with psychotherapy, stimulation, swimming, speech therapy ...
In Babies and more "Look Maggie, I'm walking", the viral video of Roman, a boy with spina bifida taking his first stepsHis mother says he is on the right track, because although he is still very young (he is only seven years old) "He is very persevering and is achieving what he wants, even if it costs more than other children his age."
Lourdes admits that the issue of friendships is not easy for her daughter, because she cannot run like other children. But as she has gained autonomy (she doesn't let anyone carry her chair and she manages it alone) she has normalized the situation. If class is missing one day, a classmate will come to help her with her homework.
Today, family life is normalized
Lourdes tells us that over the toughest years, where there were many interventions and fears, now the life of the family is very similar to that of the rest.
“In the first years we had to be on top of it and we had a very bad time with the valve, since we couldn't get it to be regulated. But now everything is stabilized, the reviews are not as continuous and Ana is more stable. We do the same things as any other family. ”
Therefore, she wishes that if a pregnant woman with a baby with Spina Bifida reads her testimony, she can encourage her to keep going, because “Ana is the best thing that happened to me. I do not deny that there are difficulties and doubts are normal. ”
"And if you ask yourself 'Why has it touched us?', He thinks it had to be at that moment, because we all go through hard times throughout life. And it is worth the reward: my life is now phenomenal and I would do the same thing I have done so far. ”
Lourdes explains that it is normal to feel lost when you receive the diagnosis that your baby has a serious malformation, and also in a stage where you are especially sensitive.
And leave one last reflection:
“As parents we will always suffer for our children, because we love them, even if they are more insignificant things. If your son has Spina Bifida, too, for the love you feel for him. ”Photos | iStock and courtesy of Lourdes Torres
