Showing posts with label prematurity. Show all posts
Showing posts with label prematurity. Show all posts

Saturday, November 17, 2018

5 Ways Being a Preemie Impacts Learning

***Be aware, you can find more of my posts on learning disabilities and educational advocacy at my new blog on AESA*** November 17th is National Prematurity Day. The topic of preemies impact my life in a huge way! My surviving quadruplets were born at 27 weeks. Due to their prematurity, we lost our daughter, Martha, the day after she was born. The other three children survived their premature arrival into the world, but that impacted them in every facet of their lives. Of course, at the time (a decade ago), I had no idea of the challenges my children would face.

Did you know 11% of all births worldwide occur before 37 weeks and that 2.5% of births happen before 32 weeks? Between 30 and 40 weeks of gestational age, a baby experiences growth of the cerebellum. When that process is interrupted, it can cause two of the five topics we will discuss today... motor coordination and cognitive (intellectual) problems.


From top to bottom: Joseph, Margaret, and James @ 8m or 5m adjusted.


Developmental/Cognitive Issues

Cognitive issues have been cited in many studies. One recent study looks at the subtle forms of cognitive impairment that might be missed on standardized neuropsychological testing in both adults and children who were born prematurely with no brain lesions (damage). While another study looked at children with enlarged cerebral ventricles in the brain, which point to changes in the white and grey matter in the brain (which my daughter has), causing developmental delays including cognitive delays.

So what kind of developmental delays might you see? It depends, but in general, children have been diagnosed with a variety of issues including autism, cerebral palsy, intellectual delay, visual perception, visual motor integration (which often leads to dysgraphia), Executive Functioning Disorder/ADHD, along with suffering academically in math and spelling.

Language

Language-based disorders are prevalent in premature infants. Preemies display slower rates of vocabulary growth, and by school age, children born preterm demonstrate language functioning below that of full-term peers. These weaknesses persist into later childhood and adolescence with one study showing weakness into adulthood. At the same time, at every developmental level, there are striking individual differences in language outcomes in children born preterm. Why? Experimental studies have shown that a variety of visual information processing skills in preterm infants could be linked to an increased risk of receptive language outcomes.

Executive Functioning

Executive Functioning is such a massive topic I have a couple of blog posts on the issue! The hallmark of ADHD is executive functioning disorder, but not all people who have Executive Functioning Disorder have ADHD. Having good Executive Functioning (EF) skills is critical for academic success. So what does EF do?

Executive functioning helps you:
  • Manage time 
  • Pay attention 
  • Switch focus 
  • Plan and organize 
  • Remember details 
  • Avoid saying or doing the wrong thing 
  • Do things based on your experience 
  • Multitask 
Lacking EF has been scientifically acknowledged to be essential for academic success. A child only lacking EF skills may never show behaviors in the classroom; however, a child having the combination of Sensory Processing Disorder (SPD), and a lack of EF skills, will often have behavioral events at school.


Behavior

ADHD, or lack of Executive Functioning control, is incredibly common in children who were born prematurely. Often the inattention and impulsivity, along with sensory issues that are not addressed (also common in children with ADHD), will cause a child to have behavior problems at school. Many times the behavior is a cry for help due to a lack of support. If your child experiences behavior problems in school please visit us at IEP/504 Assistance and Special Needs Parenting Advice to get assistance with educational advocacy.


Motor (Gross and Fine)

Children who are born before 35 weeks run a risk of having gross motor impairments. The younger the baby, and the lower the weight of the baby at birth, increases the odds the child will have a gross motor impairment. One study showed approximately 60% of premature infants displayed scores in the average range for gross-motor functioning by the time the child reached 2 years of age. This means up to 40% of children born prematurely could suffer a gross-motor impairment.


Prematurity impacts fine motor skills too. For extremely premature infants (those born before 28 weeks; like my children) they are at high risk for reading, math, and fine motor delay. Even children born closer to term (29 weeks to 35 weeks) may still suffer some neurological effects of prematurity including fine and gross motor skills.


I hope this shines a light on why it is so important to try and stop premature birth. It can cause a life time of issues. I will end with a picture of my children. They are now 10 years old and though they have challenges we face each day with a great amount of joy!





Monday, November 17, 2014

World Prematurity Day 2014


Today is world prematurity day.  Having quadruplets born 13 weeks premature, I am well aware of the trials, hardships and heartbreaks that can come from prematurity.  Being pregnant with quadruplets, I knew there was a high risk of having the children prematurely.  When I found out I was pregnant with quadruplets, my fetal maternal specialist (like an OB/GYN) pressured us HARD to undergo a "selective reduction."  I left that appointment in tears.

When I initially started the follicle stimulating drugs, my husband and I knew there was a risk of multiples.  We were reassured over and over again that between my age and PCOS there was little chance I would have triplets of more (7% chance or less) and the odds of quadruplets of more was even less (3% chance or less).  When we went in for the IUI, we were excited.  When I got my positive on a pregnancy test, I was shocked!  Not only had the first round of IUI worked (I had on RE tell me he was doubtful IVF would work for me and even if it did, he doubted I would stay pregnant since I was obese and had other health issues) but John and I had been SO sick with something like a severe week long stomach flu.  We were so desperately ill at the time I never thought the IUI would work!

I watched as the beta numbers went up.  Thirteen days past IUI, my beta was 194 and 15 days past it was 374.  I looked on BetaBase and my beta times were lining up with twins.  I was SO happy!  The idea of twins was exciting.  I felt confident I could carry the pregnancy.  It was only a couple of weeks later we went back (into the RE's office that did the IUI) and found not 1, not 2 but THREE sacs that look like it would develop into a baby.  We saw six sacs in all!  My husband and I were FLOORED!  The RE office said not to worry since it was super early.  "It is not uncommon to lose one or more of the babies at this early stage," the nurses said to pacify us. The nurses went on to explain most people do not even know they are pregnant at his early (6 week-ish) stage, so if they lose a baby they would not even notice. Those words just slid off my brain as I was still in awe I could be pregnant with up to six babies!

Another two weeks had to pass before we could do another ultrasound. We arrived and went in for our last visit to the RE before moving over to see the fetal maternal specialist.  All ultrasounds are done transvaginally and there is only so much that can be seen at that angle when the uterus is crowded with a bunch of growing embryos. At this ultrasound we could see three little babies line up in a row from the top to the bottom of the uterus. Each baby showed one tiny pixel flicking.  It was a tiny heat beating in each little body.  It was in love at first flicker!

You can see the babies lined up in a row.

At 12 weeks my husband and I arrived at a very respected fetal maternal specialist for bloodwork and an ultrasound to see if anything had changed since our last unexpected finding of three little babies.  We went into that ultrasound first with a tech.  She said she was going to look at each baby and I said that was fine.  She started to run the ultrasound transabdominally.  She ran the ultrasound wand one slow pass counting softly to herself. I could hear her say one, two, three, and then silence as she stared at another baby.  I might be pregnant, but the kids had not sapped me of my brains yet!  I caught that too!  Then she made another pass.  I counted too and counted to four before I stopped seeing tiny little bodies. I was stunned as much as the tech.  She told me she needed to go and get the doctor.  She would be back in a minute.  John was sitting next to me watching the large TV screen of the ultrasound machine.  I turned to look at him and asked on simple question... Did you just see what I did?  He paused for only a moment before replying... You saw four, right?  Yes...I said in a stunned voice.  Then came in the doctor.  She barreled in full force to confirm that we were not expect one, two, or three babies but FOUR!  As John and I were just trying to digest that information the doctor barreled on, with callous disregard that we were in shock, about the need to undergo selective reduction.



You can call it selective reduction, but I call it what it is... murder of one of our children.  As strange as it sounds, I support abortion as an option women should have, but I also adamantly disagree with calling a six week old baby a mass of tissue.  I don't buy it!  If you allow the "mass of tissue" to grow, it will become a baby.  I left that doctor appointment in tears and I don't think John was in any better shape.  We stopped at the closet place we could find to sit, think and eat... Sizzler.  We went in and got the buffet.  We each did not discuss anything.  We ordered, got out plates, got food, sat and ate before we even tried to broach the subject.  Through steak, fried mushrooms, and a side of salad we talked about the fate of our babies.  The babies that were suggest we "terminate" would be the one closest to the cervix (Baby A - Margaret) or one of the large babies in the middle (Baby B - James or Baby C- Martha).  We cried because it really was love at first flicker.  We knew if we decided on selective reduction then we would be losing one of the first babies we saw and fell in love with so what was the other choice?  After more tears and anguish, we decided we would leave it to God (or fate if you wish to call it that).  We knew we had a bit of help with me releasing eggs but how many eggs fertilized, implanted and grew was up to God.  So we were going to stick with that plan.

I can't tell you how relieved I was that we were on the same page.  That we were going to try and carry them all.  I knew it would be tough but I was determined to make it happen. We moved to Alabama (which I NEVER should have done) the doctor there was awful.  Thank God the day before I had seen a doctor in town that agreed to take me as a patient.  That night, Baby A's (Margaret) water broke at 26 weeks.  I knew enough to know they might be viable but it was too early to have the babies yet.  We quickly got dressed and sped down into Huntsville.  I was checked into the hospital and the doctor I had just seen the day before was called.  He ordered magnesium for me and it stopped the contractions.  I was able to hold off having more contractions, developing an infection, or having any other problems for six days.  By day six I was having pain in my back.  This is not entirely unusual since I had injured my back as a teenager.  When I begin to notice the pain in my back was coming in waves at a regular interval of five minutes I was really worried.  I had back labor with my two oldest children and I thought I was having back labor again.  The nurses did not believe me since it was not reading on the contraction monitor.  I knew my contractions were not reading on the machine with my oldest children either until I was rather far along in labor.

The nurses finally called the doctor when they noticed regular contractions on the print out.  When they finally checked I was five centimeters dilated!  Margaret had started moving down into the birth canal.  I was prepped for an emergency C-Section.  At first I was told my husband would not be able to be in the room because there were so many people in the OR that there would be no room for him. I told the doctor there was NO way they were wheeling me into the room without him!  They took me in first and got me the epidural.  John joined me too near my head.  Soon I was slit open and out came one baby per minute... 1:17pm, 1:18pm, 1:19pm and 1:20pm.  In four short minutes I was the mom to four new lives precariously hanging in the balance between life and death.

Baby A - Margaret
Little did I realize how the specter of death hung over one of my children as I was wheeled off to my room to recover.  John ran to look at all the children and took a quick picture to show me they were all okay.  Those are the pictures on the left. That was the first sign I got to see that my babies had made it.

Several hours later a nurse comes into my room saying that one of the babies was having a problem and that she was told to bring us to the NICU right away.  There was a slight debate on how I would get to the NICU since I had just had a C-section but I said I would get up and get into the wheel chair so I could go to the NICU.

Baby B - James
What happens next I don't think I can share in detail again.  Even after all most 7 years it is still so very painful.  To recount what happened as Martha died in my arms is still like living her death all over again. You can read more on Martha's story at My angel, Martha Renee.

I know all too painfully well the complications of prematurity.  I have three surviving children who have a multitude of disabilities and a set of siblings missing their sister. I miss my daughter and there is an ache in my heart that I think will never go away.  I know my husband also feels the pain of her passing which is why we rarely talk about her.

Baby C - My Angel Martha
There is no winning in having children prematurely.  It is important to continue finding ways to stop premature delivery and how to help those children who are unfortunately born too early.  Due to the research conducted by the March of Dimes my children were able to breathe. I will forever be thankful to their research!

If you are looking for a worthwhile charity to support please consider supporting the end of prematurity and the research done by the March of Dimes!

Baby D - Joseph
Thank you for reading this and bringing awareness to the real dangers and unexpected consequences of prematurity!