When things don't go the way we'd like

Article author: Iveta Bartošová

Some pregnancies go perfectly by the book and without the slightest complications, and yet in the first few years the child becomes seriously ill or even develops some kind of disability. Other pregnancies may be complicated from the very beginning and the baby is born already ill. Sometimes fate simply deals us a different hand than we would wish for. 

How do parents cope with a seriously ill or disabled baby? Is it possible to prevent this during pregnancy? 

How to cope with a child's disability

Whether a child is born with a disability or becomes ill later in life, both situations are very traumatic for parents. Being told the diagnosis brings up many feelings; parents usually do not believe their child is seriously ill, they are simply in shock. Anxiety, guilt, self-blame, and even aggression may follow, reflecting the pain the parent is going through. After passing through this phase, they begin to rationalize, look for solutions, and seek help. 

What helps families the most

• Finding families with the same or a very similar fate;
• reorganizing how the family functions - finding ways to adapt the household and time management to the child;
• seeking help from doctors.

It also depends a lot on

• Whether it is a disability affecting the physical body or mental development;
• how long the illness will last or whether it is permanent;
• whether the child's condition improves, worsens, or stays the same over time;
• if it worsens, then how quickly;
• what impact the illness has in society - how people around react to it and whether it is socially limiting.

If it is an illness linked to genetics, parents tend to blame themselves. If the illness is infectious in origin, it is easier for parents to accept because the cause is known and came “from outside.” The worst case is when the cause is unknown. 

How to prevent complications during pregnancy

During pregnancy, the mother may undergo various screening tests that can reveal whether the baby has any developmental defect (Down syndrome, Edwards syndrome, or Patau syndrome) or whether some pathology appears on ultrasound (for example kidney problems, cleft lip, heart defect, spina bifida, brain development disorder, etc.).

It is also necessary to say that even if a higher probability of some developmental defect is found, no test is completely 100% certain in showing what will happen with the baby after birth. It is then up to the parents to consider whether they decide to end the pregnancy or keep the baby despite possible complications. However, premature termination of pregnancy due to possible defects can lead to trauma in parents, who may struggle to cope with it very badly and for a long time. If it was the first pregnancy, the woman may become so afraid that she refuses to conceive another baby.

Every baby is different and every pregnancy is different, so if the mother is healthy, the chance of another ill/disabled baby being born to her is very small. 

It is also important to remember that a healthy child does not replace an ill one and is not a bandage for the pain that has arisen. At the same time, an ill/disabled child perceives their handicap through the eyes of their parents, so if the illness is given a lot of emphasis, it affects how the child feels and what they think about themselves. Excessive care for an ill child may then trigger psychological problems in the healthy child who is being overlooked. 

We support families financially

Since we at Monkey Mum are not indifferent when parents are struggling with their children in connection with a serious illness, we are happy to support them financially. From every order you place, a few pennies go into our virtual piggy bank, from which we then send money on to families where it is needed. Thank you for helping with us. 

In short

No parent wishes for their child to suffer in any way, especially from a serious illness or even a disability. A diagnosis from a doctor often sounds more like science fiction, and it takes a long time before parents recover from the shock and look for ways to handle the whole situation. It helps greatly to find a family with the same fate and adapt the household and time management to the child. The important thing is not to blame yourself, because that helps no one and nothing. Some illnesses can already be prevented during pregnancy when the mother undergoes the recommended screening tests; however, none of them is 100% certain, and even if the probability of a developmental defect is shown, a completely healthy baby may still be born, unfortunately the opposite can also happen. 

Do you have any experience with a disabled or very ill child? How do you perceive the different kind of care compared with healthy children?