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Case in Progress

Jonathan at birth

This is the story of Jonathon. Jonathon is a beautiful little boy with a diagnosis of Down Syndrome. The following is his birth history, and development up until his first birthday. In the next two months, you will be able to read about Jonathon’s growth and development from the ages of one year to two years, and two years to three years. If you would like to learn more about Down Syndrome, reference books are listed at the end of this article.

Jonathan was born at 39 weeks gestation, with a birth weight of 9 lbs., 1 oz. At over 35 years old, his mother was at increased risk for having a child with a disability, and she had experienced several previous miscarriages. Despite this, Jonathon’s mother had chosen not have an amniocentesis prior to his birth. She did have several ultrasounds with normal results. Jonathon was diagnosed with Down Syndrome, Trisomy 21, at the time of his birth.

Jonathan’s Apgar Scores were 8 at one minute and 9 at five minutes. An apgar is a system of scoring infants physical condition following birth. The heart rate, respiration, muscle tone, response to stimuli, and color are each rated. The maximum total score is 10. The test is administered at one minute and five or more minutes following birth in order to judge recovery of the infant.

Jonathon presented with respiratory distress and was on oxygen for three days. He also developed a lung infection and was prescribed antibiotics. Finally, Jonathan also had mild jaundice requiring light treatment for two days. He went home from the hospital at five days old.

While in the hospital, Jonathan was initially fed intravenously, but he was able begin to breast feed before the third day. His feeding progressed well, except for occasional choking. At 10 weeks he weighed 12 lbs., 13 oz., and was 23" long, which put him in the 75th percentile. Two weeks later he was referred to Pediatric Services, at three months of age.

At the time of his initial assessment Jonathan was 12 weeks old. His presented with gross motor skills at 8 weeks. He could hold his head up briefly when on his tummy and push on his arms. His fine motor skills were at 8-10 weeks. Jonathan could grasp a toy momentarily and bring a toy to his mouth. His cognitive development was also at 8-10 week level. At such a young age, it is not really indicative of his development, but he could follow a circle with his eyes and look at his hands. Communicatively, Jonathan was at the 8-12 week range. His was able to turn towards a noise and look when talked to. He would "talk back" with throaty sounds and coos.

Jonathan was sleeping 6-7 hours per night and breast feeding every 1 to 3 hours. His mother was concerned that he was still not coordinating his suck, swallow and breathing, so she consulted a lactation specialist. The specialist felt that his hypotonia and smaller than typical oral cavity, was contributing to the delay in his developing this coordination.

Hypotonia, low muscle tone, is defined as loss of tension or pressure in the muscle. This is what gives Down Syndrome children the look of being floppy and is a typical trait. Low muscle tone usually affects all muscles of the body. It affects the child’s ability to move, gain strength and develop motorically, and can impact all areas of development. Although, hypotonia cannot be cured, it can be improved over time with appropriate intervention.

The mouth is also controlled by muscles. If the mouth is small , with a shallow roof, along with low tone, the tongue may appear large in relation to the size of the mouth. This was the situation with Jonathon and was slowing his successful coordination of breathing, sucking and swallowing.

Following a "get acquaintance period", it was determined that Jonathan would benefit from physical therapy and child development to address his physical needs related to his growth and acquisition of developmental milestones. His parents were in need of additional information regarding his diagnosis and what impact it would have on his development. Weekly appointments to address both his development and the parent’s education were scheduled.

In October, at 9 months of age Jonathan had received intervention from Pediatric Services for six months and was due for a review of his progress. His health in the past six months had included difficulty with constipation and an ear infection, but was otherwise good.

At 9 months of age or 37 weeks, his gross motor skills had progressed to being solid at 12 weeks, with scattered skills to 24 weeks. Jonathan was able to roll, hold his head steady when supported in sit, and also put some weight through his legs and feet. His cognitive skills were complete at 16 weeks and scattered to 28 weeks. Fine motor skills were at 20 - 24 weeks. He could shake a rattle actively, hold a small block and pick up a raisin size object. Language skills were at 24 - 28 weeks, with Jonathan just beginning to say "da-da". Personal and self-help skills were at 16-24 weeks. Jonathan could pat his own bottle, spontaneously smile and feed himself a cracker.

Although Jonathon had made progress in all areas, it was felt that all the current services remained appropriate and would continue.

Also at 9 months, Jonathan’s parents requested a consultation with the Pediatric Services nutritionist. At that time, Jonathan was nursing every 2 to 3 hours with a longer stretch in the evening. Nursing remained his primary source of nutrition. At seven months solid foods had been introduced, starting with cereals, fruits and then vegetables. He was observed eating and was noted to have appropriate eating skills for a child who had been eating solid foods for two months. His parents were concerned that it took him seven minutes to finish one jar of food.

They were also concerned about Jonathan experiencing quite a bit of constipation. His constipation was felt to be due to his low muscle tone, which makes it difficult to push the stool through the bowel . The nutritionist encouraged his parents to feed him home-made fruits, vegetables and grainier cereals in addition to jarred foods. Adding texture to his diet helps digestion and will usually minimize the constipation. If the constipation persisted, it was suggested that they increase his fluids. Finally, if pushing the stool was noted to be visibly difficult they could try flexing his legs to his stomach, which give counter pressure when he pushes.

During the next few months leading up to Jonathan’s first birthday, work continued towards getting him to be able to sit independently and play with more challenging toys.

During the winter Jonathan began developing more ear infections and had several courses of antibiotics. Most children with Down Syndrome have very small ear canals, making it difficult to keep them free of fluid and infection. Just prior to his first birthday, Jonathan received PE tubes in both of his ears to restore normal function to the middle ear.

At one year Jonathan weighed 21 lbs., and was 29" tall. His perceptual and fine motor skills were at 20-24 weeks; cognitive development was at 16-28 weeks; communication development was 24- 28 weeks; social emotional development was at 20 -24 weeks; self help skills were at 16 - 20 weeks; and gross motor was scattered to 24 weeks.

Jonathan now maintained attention to someone speaking to him and turned toward voices to listen. He vocalized single consonant sounds and displeasure by other than crying. He was reaching for dangling toys and engaging in play. He explored toys by shaking, banging and putting them in his mouth. At this time he was much improved in taking pureed baby foods, and was no longer having difficulty with the suck, swallow, and breathing coordination.

Jonathan was noted to have made significant gains in his first year of life. Goals were set for the next six months, continuing with weekly physical therapy, child development and parent education. Jonathan’s parents expressed their desire that he learn to crawl next.

Come back March 21st to find out all the things Jonathon learned to do between his first and second birthday.

Suggested Readings

Babies with Down Syndrome- A New Parent’s Guide, Edited by Karen Stray Gundersen, Woodbine House
Keys to Parenting a Child with Down Syndrome, by Marlene Targ Brill
Teaching Your Down’s Syndrome Infant: A Guide for Parents and Professionals, by Marci J Hanson
Communication Skills in Children with Down Syndrome: A Guide for Parents, Woodbine House
The Language of Toys, Sue Schwartz, and Joan Heller Miller, Woodbine House
In association with Amazon.com. Available now by at Amazon.com.

Julie Loe

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Last modified: January 26, 2013