Understanding the precautions of prematurity!
Let us first define what special needs are and what we are going to talk about. A special need in most conversations are quick to bring up gene or chromosome disorders and physical special needs that are common in the speech of society. We talk about the 4 type of special needs found in people today, plus the special needs that are watched for in the nicu. NEC, Retinopathy, PDA in the heart, chronic lungs, brain bleed and other conditions may have a nicu baby in a bad situation. We will assume you already know about the genetic chromosome disorders like Down, Apert, and Turner Syndrome and have talked with your physician about them.
In a physical special need, you hear of muscular dystrophy, epilepsy, multiple sclerosis, chronic asthma etc. In behavior based systems we have ADD (attention deficit disorder), bipolar, oppositional defiant disorder. Sensory disorders like blindness or sight impaired and deafness or hearing impaired are also common in the nicu but with today's science, we have many more safety precautions to look at compared to years ago. As nicu baby parents we are most concerned with developmental types of disorders like down syndrome, autism, dyslexia, processing disorders when in conversations with most parents. We don't take in the consideration that anything could actually happen to our sweet baby, but it can!
It is customary in the nicu or labor and delivery floor to have a neonatologist come in your room and explain the precautionary problem areas that are common among premature children. This talk is usually very frightening to parents and causes much i'll feelings for them. The meaning of this talk is to bring awareness to the possibility of future harm and the neonatologist has to give it so that parents can be made aware of types of problems that can occur in the nicu or soon after. Unfortunately there is no way of knowing certain outcomes for some special needs during the time your baby is in the nicu for some of these special needs. During your baby's nicu experience you will hear the staff talk about the baby "fighting for their life" or "pulling through" and seemingly no parent fully wants to take in the serious nature of what's going on.
We have a quote we use here at the preemie paradox.
"Having a preemie is like cooking a turkey halfway in the oven only to take it out and finish it in the microwave"
Sometimes things just don't go as planned in the nicu and your baby may have a special need. Most nicu kids grow out of the special needs they get in the nicu but some of these special needs will stay with your child. We compiled a list below that outlines a collection of major divisions of special need areas and their relation to the nicu and post nicu babies. This list isn't a complete list of all that can go wrong but is meant to cover the different divisions of the most common special needs areas you'll hear of in the nicu.
Common in the nicu
ADHD - ADD
NEC - PDA
Here are a few conditions you may hear of in the nicu.
Anemia. An insufficient amount of red blood cells. In a term baby the fetus stores iron during the later months of pregnancy and uses it after birth to make red blood cells. Loss of blood from a delay in bone marrow activation, can also cause anemia. Anemic nicu babies are treated with dietary iron supplements in foods, drugs that increase red blood cell production, or, in some cases, a blood transfusion.
Retinopathy or ROP. An abnormal growth of blood vessels in the retina. ROP can lead to bleeding from the lining at the rear of the eye that relays messages to the brain. This may result in vision loss. An ophthalmologist will look into the baby's eyes for ROP and other eye related problems. Many cases heal without any further issues and with little or no vision loss while the extreme cases may call for a cryotherapy to reduce the problem areas. During your post nicu specialist visits, expect to see a ophthalmologist for the first year of being out of the nicu.
Patent ductus arteriosus or PDA. This is a very common heart problem in the nicu. While in the womb, much of the fetus's blood goes around the lungs through a passage called the ductus arteriosus. This gap usually closes after birth. If this gap doesn't close then the lungs don't get enough blood and the heart must work harder to make up for the loss. Drug treatment is the usual method of fixing this problem but surgery may be the next step if the drugs can't close the gap.
Necrotizing enterocolitis or NEC. This is an intestinal problem that occurs when the bowels are damaged due to decreased blood supply or poor oxygenation. Bacteria normally present in the bowel invade the damaged area, causing more damage. A baby with NEC develops feeding problems, abdominal swelling, and other complications, even rupture of the bowel. The baby will be fed intravenously through an IV while the bowel heals. There are times when the damaged sections of the intestine must be surgically removed.
Jaundice or hyperbilirubinemia. We have all seen the nicu babies with the eye mask on under a blue light. The excess of bilirubin, which comes from the breakdown of red blood cells causes Jaundice, and is common in preemies who have blood-type incompatibilities with their mothers. Babies with jaundice have a yellowish tinge to their skin and eyes but the condition is worrisome only when the liver is to sick to reduce the bilirubin from the blood. If the bilirubin level gets too high, it can cause serious brain problems. For this reason a baby's bilirubin level is checked frequently. If it gets too high, the baby will be treated with special blue lights that help break down bilirubin. This treatment, is called phototherapy. In extreme cases, a baby will need a special type of blood transfusion from a donor to reduce very high bilirubin levels.
So what do I need to do with this information about special needs?
We don't want any preemie parent to be frightened or fearful of the information they receive about special needs. Unlike the duties of the medical staff to tell you upfront of the dangers of these special needs, we want to tell you that we understand the importance of having a support group to help you gain more education about these disorders and get a community that can help you learn more about the experience of having a child with special needs. Today there are many organizations that specialize in special needs care with law agencies that can help you when things can't be resolved. There are social media groups who share secrets about care angles you can use who have a perspective and empathy as one who also has a special needs child. We just want you to be ok if by chance you get a special needs diagnosis from your medical staff. The founder of this website and the preemie paradox company has a preemie daughter who has autism. Just love your child no matter what is wrong with them!
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