For this post I feel that and introduction is needed – there are no parents in the whole world who do not feel concerns during pregnancy for the future of the baby. Whether they’re concrete or not. When there’s already a special needs child in the family, that fear is taking on a shape, a name and a life of its own, no matter what we do. It’s legitimate and even important to recognize it to put things into proportions. Those of you who have trouble reading this post can simply skip it. In this post we will try to answer the concerns raised about whether the baby will have autism (or any other problem or difference).
Will the baby have autism and what are the consequences
A lot of people don’t understand the consequences of diagnosing a child in the family with autism. One of those is on the decision of having more children.
There’s a lot we don’t know about autism, much more than we do. One of the issues that are unclear, is why there are many families with more than one child diagnosed on the spectrum.
The meaning of genetic testing
The journey through the world of genetics doesn’t always give clear answers. You could end up with a clear answer, an unclear genetic finding, or no answer at all. In fact, every few years, more knowledge is added to these tests and they get updated nonstop, so sometimes you might try to do them again. Will the baby have autism because of a genetic factor? The results from the genetic tests have several options:
1. Clear genetics finding: For example, the Fragile X – a syndrome that also includes autism symptoms. If there is a definite genetic factor, you may choose the process of embryo selection, to avoid a baby with the same known problem.
2. A known, but unclear, genetic finding: for example, a duplication/deletion/mutation in a gene, without a lot of data to build on. Your geneticist will let you know what you should do, but the answer may be that there is no answer.
3. No finding has been found: like the previous option. If no known genetic information was found, this does not mean that there is no genetic problem, but that genetic science does not know a gene responsible for the problem. It’s important to note that genetic testings are constantly changing, there may be a clear genetic answer in a decade even though it hasn’t come up now.
In any case, bringing in another child involves risk, according to statistics, even if no clear genetic finding is found.
Additional Risk Factors
Besides the genetic factor, there are environmental risk factors for the physical or neurological health of the baby. There are factors that increase the risk of normal development of the fetus or during infancy that can lead to autism. Environmental factors that increase autism risk:
- Smoking during pregnancy
- Illness during pregnancy. For example, Rubella increases the risk by about 7%.
- Father’s Age
- Premature birth and it’s complications.
- A particularly difficult birth or complications during the early days of the newborn.
- There are other risk factors suspected and being examined.
Do you take the risk and have more children
At some point in our lives we won’t be able to make children. Because of the rising age of parenting, along with the fact that sometimes it takes time to get a diagnosis, most of us actually have make a choice: gamble and get pregnant knowing that we can have another child with autism, or give up a natural pregnancy and go another way, like fostering or adoption, or alternatively decide there won’t be any more children.
In a lot of cases, parents have another child because they know their special needs child will live after them, and someone will have to look after that child at least at the take-home level for the holidays, make sure no one harms him etc.
In this case, parents will actually be able to choose: if they know of clear genetics – PGD (preimplantation genetic diagnosis), or a natural pregnancy with an amniotic fluid test or a placental chorion test and abortion if the genetics was found in the test, or simply get pregnant and give birth. Whatever comes will be received with love and happiness.
It’s a complex decision, and even more complex, when it comes to an eldest child who has no siblings. In fact, parents have to decide whether they will be willing to deal with two or more children with autism, and all of it’s complexities. Or the other hand, accept that they will have no more children, and that that child will have no siblings, or that the neurotypical child will have no siblings like him, who will help him bare the responsibilities that usually come with the special needs sibling.
Our Personal Choice
We’ve been to this place, too, and had to choose several times.
The first choice was after receiving the diagnosis of our eldest son. I was already pregnant with a boy, our third child (between them, we also have a neurotypical daughter, special in her own way). In Israel, an abortion can be performed up to the 24th week of pregnancy, even if there is no established suspicion from genetic testing, due to a sibling with autism. The next day, following our eldest son’s diagnosis, I was called by his pediatrician. He told me very clearly : “If you want, because you’re likely to have a baby with autism again, you can go get an abortion. Just say, and I’ll write you a letter.”
Don’t get me wrong, the doctor was actually okay. Very blunt, but okay. These things have to be said that way. Directly, so no one can misinterpret anything. The risk, according to statistics starts at around 20%>, even if there is no clear genetic finding.
My first decision – refusing abortion
I refused. I told him we’d be ready for what was coming. Our eldest didn’t function at all at the time. He was like a one-year-old baby. I didn’t know if the baby will have autism, but I decided that abortion wasn’t on the table for me. I’m not saying it’s wrong to have an abortion. No woman should have a baby if she doesn’t want to, for whatever reason. I just didn’t want to do it.
And we really had a cute little baby. But at six-months-old, I noticed that he wasn’t turning to look at me, when I called his name, and I rushed into our child development center. They tried to reassure me that I was being hysterical, because just under a year ago, my eldest was diagnosed with ASD. At that point, I demanded that he be monitored. And indeed a few months later, a hearing problem was discovered. This led to endless complications and communication attempts at the speech therapist.
Two years later, with a child who still has a language and communication problems, we asked for a diagnosis. It took almost six months to get a date. And finally, he was diagnosed – high function autism.
When the neurological told us he was on the spectrum I was relieved. For years, they looked at me and claimed I was crazy and hysterical. At least my sanity has been restored to competence. I’m not crazy.
Second decision – whether to have another child who may have autism
Currently the headcount is like this: two kids with autism, and one without. The Eldest also had epilepsy. Nope, I’m not a young girl anymore. Should we try for another one?
For six months we were on the fence, thinking about what to do. What if the baby will also have autism or epilepsy? In the end, we decided, whatever comes will come. We’ll prepare in advance, and we’ll do whatever it entails.
We had meetings with all the medical teams that accompanied us over the years. From the geneticist to the neurologist, the child development professionals, and our private occupational therapist, that’s been accompanying us for the last few years. Together we tried to build a plan for this hypothetical baby.
Preparing for pregnancy
What’s the best way to get it done: Natural pregnancy or PGD (an IVF process, with the selection of embryos). Couples who have clear genetics that cause autism, can choose to do a PGD. It should be taken into account that the process of examining the embryos, can be harmful to them. PGD can cause developmental problems in itself. What is the exact risk factor is not clear, but there are such children.
How to monitor the pregnancy (lots of ultrasounds, placental chorion, late brain ultrasound and more).
What to do immediately after birth: preserving cord blood, examining a neurologist immediately after birth, geneticist, Routine monitoring of the child’s development until the age of three, etc.
We came to a decision together: the prospect of another healthy child, who could, together with his sister, accompany his brothers, if they needed help after we pass, was greater than the risk. And so, I did get pregnant with another son, which is supposed to be born after the holidays (November).
Another son means a higher chance for ASD. This gets us thinking about what will happen again.
Third decision – giving up abortion again
And again a test at the gynecologist. This time a friend from work, one who saw exactly what I was going through. She asks me again if I want to have an abortion, she promises to do it herself and accompany me hand-in-hand all the way.
Are you sure? She’s asking. Are you sure you want to raise another kid like that?
I tell her that no mother chooses to have a different child, we all get what we’ve created, for better or worse, and with a lot of love.
“It’s going to be different this time,” I tell her, “this time we’ll be vigilant for any signs, you’ve seen his brothers and how they’ve progressed well. He might even be a normal kid, who knows what’s coming.” I comfort the doctor and myself together. She’s also a friend and wants the best for me.
I remember how I ran out of her O.R. once when an ambulance brought my kid to the E.R. The other nurse answered the phone and informed me aloud that he was coming to the E.R. The doctor looked at me while the other nurse rushed to wash up and replace me and told me, “Go! everything’s fine. Another nurse will replace you. It’s a minor surgery and we’ll quickly be done.” By that time she and another nurse went into the O.R., and I ran to the Children’s E.R. to be with him.
Now she looks at me and asks again, “Are you sure? Another one with autism or epilepsy? Will you be able to handle that?”
I look at her and tell her, “I’ll be fine. Don’t worry.”
Accepting our choices
That’s the reality for a lot of parents. We need to prepare for the worst and hope for the best. It’s best to come to terms that things are not as you might have hoped, and do our best even when it’s difficult.
I came home after that meeting, sat in the chair, my little one climbs up on top of me and my huge belly, and hugs me. I smile at him, he’s sweet and heart melting. “How could someone suggest to give up on you?” I wonder, as the fetus kicks him. Pretty soon, this baby is going to have to get used to the fact that he’s going to have to share mom’s hands with everybody. On the other hand, there will also be quite a few hands that will want to share him.
Our boy will soon be born. I am in the last few weeks of pregnancy (thank God). After a complex pregnancy of the kind I’ve been looking forward to be after. I promise him and myself it’ll all work out. We’ll be fine we’ve been through the worst, so it doesn’t matter what comes.
The question – whether the baby will have autism, does not have one correct answer, and there is no good decision in this story. Parents like us are going to have to take a decision, with everything that comes with it. The best way is to prepare to welcome another complex child, prepare a work plan and monitor the development of such a baby, and at the first sign get to work. If you see that at six months old there are signs, don’t wait any longer. Demanded follow-up! At the age of one, demand treatment, and go child development activities. What can be done for them at these ages is significantly greater than what is possible after the age of two. Save Cord blood – it’s not a luxury – it’s a must. Today, kids can have Cord blood therapy, even in Israel (research stage, for some syndromes and illnesses).
And even maybe after all these preparations, the worries and madness that enveloped this pregnancy there’s a good chance (even really, really good) of having a perfectly healthy and Neurotypical child.
Rejoice in your decision – the heart may not always be at peace with it, but there is more than one way to be parents. Enjoy the decision and find its bright spots. If you’ve decided not to have another child, at least you’re also giving up on changing diapers, and waking up at night. Proceed to the next level happily – returning to the adult world without babies is fun too.
In the meantime, Hagai and I will wait for the baby to come. And whatever comes we will enjoy – no matter who he is, what he brings with him, one thing is certain he will bring the same happiness that any his brothers have brought.