Last year I wrote a post explaining why I felt the need to speak out. In it I talked about an encounter, with another preemie mom, that changed my life.
Here is a part of the original post...
**************
One day a friend of mine asked me to join her for lunch. She was meeting a first time client and thought that her and I would like to meet since the client's daughter was born early. My friend suggested that I bring my daughter (who was around 2 at the time) so the 2 kids could play together.
When we arrived I was surprised to see the client was without her daughter. As we started talking we realized that we had a lot in common. Both of our girls were born at 25 weeks, both of us had premature rupture of membranes and surprisingly, both of us delivered at the same hospital (this was odd because the hospital was 90 minutes away).
I opened my trap and started spouting off about how I was frustrated with some preemie moms who say that they wish their baby had not survived. I told her about how the neo at the first hospital told me that I had the right to not resuscitate our daughter. I proudly told her how I flipped out on the doc and that I was then transfered to the 2nd hospital (the same hospital she delivered at) and how they told me that their interest was in saving my baby, and my care came 2nd (I haven't gotten into this much but I will at a later date). I must have gone on for 15 minutes about saving preemies and how mine was such a miracle. I was so immersed in my own glory that it took me a minute to realize that "the client" was looking very angry. I shut my mouth long enough for her to collect her thoughts. She then said,
"I wish someone had given me the choice."
She went on to tell me that the doctors at the hospital told her that her "job" was to endure the time she needed to in order to save her baby (her water had broken and she was admitted). Even though she was telling them that she wasn't feeling good, they ignored her. (this also happened to me at the same hospital-a story I will tell another time). She asked them about having another baby if hers did not make it but they just kept on telling her that her baby would survive. She asked them about statistics but they just kept on telling her that she needed to relax (again-also happened to me at the same hospital).
The time finally came when her daughter needed to be born (due to infection-secondary to PROM). She lost a lot of blood during the c-section and ended up losing her uterus. Her daughter did survive but was massively affected by her early birth.
Again she said, "I wish they had given me the choice. I wouldn't have agreed to all of the meds to stop labor. My daughter suffers so much. I couldn't bring her here today because there is no room for her equipment at this restaurant. I can't even have more children."
My world changed that day. I was able to see "the other side".
**************
Since starting my blog I have met so many wonderful people. With each new relationship came an understanding that we have some things in common. With some it was prematurity or pediatric mental health issues. Some it was a love of scrabble or even long discussions on religion (or lack of).
But, with all of my old and new friends, I do not share ALL of the same beliefs as they do.
Did that stop me from getting to know them? No.
Did that stop me from being friends with them? No
Did it stop me from being able to understand how they feel differently than I do? No
To argue ones point or opinion is one thing. Being nasty to another human being is another thing.
If someone takes a different side on an issue, are they not worthy of being treated with respect?
If you only surround yourself with like-minded people, and treat all others with nastiness and hatred, you will never grow.
Subscribe to:
Post Comments (Atom)
210 comments:
«Oldest ‹Older 201 – 210 of 210And speaking of "going on and on" - as in my last post.
May I add that my son had OT screening in grades one and two before I knew much about OT at all and in grade three, after I knew a bit more, he received a screening at my request. I was told he was "borderline" in grades one and two. I didn't hear anything from the OT in grade three until...
On the last day of school in third grade, we informed the school we were pulling him out - he would not be returning.
The next day I received a phone call from the school's OT. She said: "I DID see something... and can refer you to some outside help".
As the children grow older and encounter the educational system, more of these inequities, and failures in early assessment and intervention and the educational system, become apparent.
Joan
The American Academy of Pediatrics, in the 1960s, proposed a comprehensive approach to caring for children with special healthcare needs (CSHCN). It was called "the Medical Home". It means an approach, a comprehensive, coordinated, culturally sensitive, integrated apprach to care---it doesn't mean a place.
The idea of Medical Home has never caught on with pediatricians, even with the AAP standing by their recommendation. Think about it--the professional organization of the pediatricians making a recommendation which the membership largely ignored . . . for all these years.
In any case, the idea is BEGINNING to catch on in pockets around the country. If/when this idea, or approach to care for special-needs kids, catches on, peds won't be as likely to miss or blow off issues such as the motor issues/cerebellar issues being talked about during the last few posts.
Ask your ped about the medical home approach. The beauty of it, for Joan and Kellar's mommy and others here is that it is comprehensive and integrated. There is a care coordinator who writes care plan alongside the parents, who know their child well, and who have questions. This type of approach has built-in communication among the specialists, follow-up with stated problems--they will be addressed at every visit. This plan allows immediate access to the ped, any time. The charts of the CSHCN kids are flagged, and office visits are always given extra time. This approach has action plans and emergency plans that apply at daycare and at school.
A diagnosis and follow-up with specialists would not be delayed for 9 years if the medical home approach was in place. Parents would not be dissed or made to feel wacko with their concerns.
Chris and Vic
Helen Harrison
To 23 week twins mommy who asked:
"I was wondering if you could share when you as a parent noticed things that were different with Ed. You have said NICU follow-up thought he was doing great. You also mentioned he could read by age 3 (this is not typical...did it concern you?). You say he has mild CP, was there anything about his early development that clued you into this? What about his autism?"
***
First the CP. Ed's motor skills were sometimes late but they usually happened within the norms (corrected for premturity).
The doctors did mention "tone abnormalities," and they had us see a physical therapist, but the words "cerebral palsy" were not used with us officially until Ed was about 8 years old and needed heel cord surgery.
The docs "knew," of course, but did not share the words with us. This is very common. I can't tell you how many parents tell me they first encounter the words, not from a developmental specialist or physician, but from an insurance form.
We strongly suspected that Ed had some degree of CP from the start. Our suspicions were validated when some cousins of ours -- a pediatrician and a cardiologist -- were visiting when Ed was about
4. They asked us if our doctors had talked to us about CP, and we said no. They then told us, "Well I don't know what they call it in California (where we live), but in Texas (where they were then living), we call it cerebral palsy." [However, docs everywhere tend to avoid using these words with parents because of the ensuing unpleasantness.]
As a baby, Ed was hypotonic in his trunk and face, and hypertonic in his legs and to some extent his arms. He would gag easily on his food, he had trouble swallowing and had/has an overactive gag reflex. He was often constipated --another sign of possible CP.
When he was first learning to roll over and sit, he did not do so in the "fluent" way that fullterm babies do. He didn't roll using the smooth, segmented movement fullterm babies do; he more or less flipped himself over.
He "felt" different from full-term babies, more wiry and tense in his legs, more weak and limp in his upper body.
When he started walking, his steps were unusually "springy" and he walked on his toes, particularly on his left side. He did not run smoothly and, in fact, had trouble running at all.
Ed has significant mobility problems that have worsened as he has grown -- CP does get "worse" in terms of becoming more limiting as a person grows.
He cannot physically manage such skills as dressing himself -- forget tying shoes, thank heaven for velcro! He has had to have heel cord surgery and still walks with what DH calls a "Frankenstein" gait. He cannot handle uneven terrain. He is quite physically limited, but of course, it could be so much worse. He can still walk. I know preemies who have lost the ability to walk with age.
Many developmental specialists would not even describe our son as having cerebral palsy. I found this out when serving on the PORT project (premature outcomes around the world at school age).
One of the most time consuming tasks we undertook on the PORT project was trying to get all the docs "on the same page" as to what consituted cerebral palsy -- mild, moderate, and severe.
At one point Dr. Nigel Paneth, the leader of our group, showed a film strip of a Jamaican preemie at adolescence. (The only member of the Jamaican cohort to have a motor disorder, BTW -- no ventilators are used there.)
The Jamaican girl's gait in the filmstrip was slightly worse than our son's, and the researchers were trying to decide what *degree* of cerebral palsy she had, when one specialist, working with Saroj Saigal's group, blurted out "You call that cerebral palsy? We'd call that clumsy child syndrome."
Clumsy child syndrome is another name for developmental coordination disorder or DCD, that Joan has just mentioned.
Most of the other docs were astounded by the Canadians' admission, but it did explain a lot about their great follow-up stats!
There are many studies in which only about 10 or 15% of preemies are dxed with CP, but, in reality, close to 40 or 50% (or more) of their cohorts have motor problems that interfere with the normal life.
CP is largely a matter of highly subjective labeling which is easily manipulated to make outcomes look better than they really are and to kick the can down the road (in regard to families) so that someone else will have to have the eventual CP *discussion.*
The best way for a parent to tell is to compare your child with a fullterm child of a similar age (when corrected for prematurity). How different is the quality of physical movement? How different are their physical skills and functioning?
Also I should add that unless you need a CP diagnosis for funding or services, having the words on your child's chart (or not) will not make much difference.
Helen
>> TPN (which reportedly causes a loss of one IQ point a day for each day the child is on it)?
This research is from a study 10 years ago (1997). Manufacturers have been making efforts since the study to significantly reduce the albumin concentration. Though I can't testify to what the most common range is now and haven't seen more recent studies, I think it is important to note this may not be the case for the majority of neonates now.
To 23 week twins mommy who asked:
"You have said NICU follow-up thought he was doing great. You also mentioned he could read by age 3 (this is not typical...did it concern you?). "
***
I was not concerned that Ed was reading early -- especially since I'd been trying to teach him to read even before he could walk, using the Glenn Doman word card method. [I do *not* recommend the rest of Doman's "patterning" program, however].
Ed was very eager to learn letters, shapes, numbers, and words, and would put up with my instruction for hours every day. It helped that he wasn't all that mobile in the beginning -- a captive audience, so to speak.
Here's a run down on his early mental development:
He said his first words by about 10-11 months corrected age -- things like "mama," "hi, dad" "ball" and "up." By corrected age 1 he was imitating car and rooster and other animal noises and saying about 20 words.
Several months later he was reciting books like "Hop on Pop." He would demand: "ah-din!" (again) to have us re-read books to him...constantly.
By about 16 months he was counting to 20 and saying words like "walrus" "exercises"[meaning PT] "monkey" "llama" and "tiger."
He was a whiz with a shape sorter and would sit on the floor saying "There's a parallelogram" and "Here's a trapezoid" "Oh, look a rhomboid!" [His skill and verbalizing totally freaked out other parents in the pediatrician's or dentist's office! This tiny child in glasses who spoke like a genius -- they thought.]
By two years he had longer phrases and sentences: "riding in the truck at night" "put money in the bank," "where's dad?"
He knew the names of his aunts, uncles, cousins, family friends and therapists and used them appropriately, but couldn't tell who we were without hearing our voices or touching our hair [he has face blindness].
He was, by age 2, really enjoying his word cards and reading about 30words. The psychologist at the follow-up clinic said he was intellectually advanced for a two year old, but phsycially more like a 14 month old.
***
And so it went. Soon he reading whole books holding them close to his one good eye.
But Ed was clearly not like the other kids in the neighborhood or at preschool, and it soon became obvious that he would not be easily mainstreamed. By age 6, we gave up on trying, and when a space in a good special school opened, we took it.
Ed has always memorized well, but has trouble forming original sentences. He could not (and still can't) reliably use pronouns or verb tenses or express himself in any but the most elementary ways. He has trouble reliably answering "yes" and "no" questions...but he reads simple books in English, French, and Spanish and knows a bit of German, Russian and Chinese.
He was/is very much in his own world and is put off by children and other retarded or autistic adults. He prefers more predictable "normal" adult interactions. He often does not like going to his special school because of the unpredictable and noisy behavior of the others. [This is one reason why the thought of putting him in a home is so abhorent to us -- we know he would hate it.]
As a small child, he liked turning swtiches off and on and opening and closing cabinet doors. His favorite toys were ones he could use repetitively and obsessively like his marble roll (he still plays with it at age 32 years) and "See and Say" toys like "The Farmer Says" which we've collected in many languages.
He always needed to have huge and complete collections of things -- like scrabble letters, and *all* of any series of book, or car, or truck model, and thousands of stickers of various kinds. Horrible tantrums would result if he lost one of a set or couldn't complete a collection.
We once drove 4 hours home from Lake Tahoe to pick up the *all* his scrabble tiles because we knew that otherwise he would be unbearable for the entire "vacation."
Instead of actually playing with his toys he would gather them up and put them down a slide. Very repetitive, little in the way of "imaginative play."
Otherwise his favorite childhood activites were throwing rocks into water or watching waves break on the shore -- both of which would leave him laughing uproariously.
Ed has always had an obsessive need for certain kinds of order. If a drawer is open by even a fraction of an inch he can spot it, and will not rest until it has been closed to his satisfaction -- this is how I learned his vision was much more discriminating than we'd been led to believe.
Although he has a bit of a sense of humor (and, as I mentioned, loves to laugh -- often for no apparent reason)he is extremely literal minded and becomes upset with words that have more than one meaning or with jokes. He doesn't like it when we are laughing or talking in his presence unless it is part of an interaction with him. He prefers to eat by himself watching the news, which he tries to memorize -- at least the frozen phrases -- and later recite.
He's had almost all the preemie "sensitivities" -- especially to noise -- and would become hysterical in reaction to certain sounds. We could not take him to birthday parties or NICU reunions, or any place where he couldn't control the noise. He's a little more trusting of the world now and a bit less likely to freak out in public, but we tend to be very careful with him nonetheless.
He becomes quite irritated with small children and the sounds they make, and will try to push them away, or off playground equipment, or down stairs. It is a challenge when his young cousins ages 1 and 3come to visit.
He has been able to interact with others mostly through music, which is his great gift and obsessive interest. Despite his CP, he is skilled at the keyboard and has a huge repertoire of rock music. According to "real" musicians, he has a very good musical sense and unerring sense of rhythm.
Although the words "autism" were never used for him, we did see "PDD-NOS" on an insurance form once in the pediatrician's office, and simply began using the word "autism" with the docs who never acted surprised that we "knew."
Helen
From Helen Harrison
To anonymous who said:
"This research is from a study 10 years ago (1997). Manufacturers have been making efforts since the study to significantly reduce the albumin concentration."
It is aluminum, not albumin, but anyhow...the last I heard which was about two years ago, the only center that had reduced or eliminated their aluminum was Mayo Clinic. Doug Derleth told me they mixed their own TPN.
When our son was in the hospital in 2004, at UCSF, he needed to go on TPN for several weeks. When I asked the MD about the aluminum issue he seemed suprised -- never heard of it.
He went and asked whoever it was who made their TPN and was told "Don't worry TPN (with aluminum) is so safe we even give it to preemies!"
I sent the MD the NEJM article, and he never reappeared in our son's room. But I was pretty clear on the fact that UCSF had not changed their formula.
What manufacturers are you referring to?
Helen
Helen, thank you so much for your detailed explanation of Ed's development.
I'm finding medical professionals are reluctant to label my son with CP, although I suspect he has a mild form. His official dx from the neurologist is transient dystonia. I googled it and I found an article you wrote. I am waiting for the day they call it mild CP, but I don't know if it will come. His very amazing PT still won't call it CP, and always says, "see how he does this...(i.e. rotates his trunk when getting from sitting to crawling)..."kids with CP don't do this. He is a true case of transient dystonia." I try and tell them I'm not scared of calling it CP if that's what it is but everyone assures me it's not and his low tone in his trunk will eventually go away.
I am finding he is improving quite a bit, and even though I know he will walk, I wonder if he'll be labeled "clumsy" and never receive an official dx? We shall see.
From Helen Harrison
To 23 week twins' mommy:
It will all unfold in time, and labels don't matter.
I would just leave everything in the "laps of the gods" until about age 5 or 6 when you have to think about further education.
Don't sweat the early stuff. There's really nothing to be done, in any event, that you are not already doing.
I think you are going into this with absolutely the right attitude.
Helen
Helen, as you write the particulars about Ed, I see how much like Ed Vic is--the pronoun thing, the noise sensitivity, the closing of the drawers, the repetitive behaviors replacing the imaginative play. Vic also memorizes more and better than the average-intelligence person. He loves music and has impeccable rhythym, but lacks the fine motor skills to play an instrument, even a rhythm instrument. Vic, too, seems to have a gift for languages
--he will be put to the test in a Spanish class this coming trimester at his middle school. Vic's vision is mysterious, as is Ed's--Vic cannot seem to see in certain planes and does not track well. Vic's visual/spatial difficulties are a huge obstacle for him. Vic cannot do buttons and snaps, nor shoes laces---yes, thank goodness for Velcro and for canvas slip-ons.
In writing about Ed the way you have, you give me a chance to imagine how it might play out with Vic into the future. My imaginings leave me feeling both reassured and saddened. I now see how & why you have often used "sadly" as the first word in a summarizing statement, in your posts--on this blog and on the preemie support lists.
Like the others, I thank you for your candor with the personal details.
For the person who dreaded the thought of hydrocephalus with a shunt (following Grade III-IV brain bleeds), it seems that both Ed and Vic are examples of what the consequences could be.
Chris and Vic
Joan - I have to add to your anecdotal experience with ours, as well.
My second twin did not sustain an IVH and breezed through the NICU experience, coming home before her due date, no meds, no monitor, feeding well. We too, thought that since she did not sustain an IVH, that all would be well. .
Well. .these are the abnormalities we noticed in her development:
Unable to sit independently at 9 months adjusted age. She had good head control, but as soon as we took our hand away from her back, she'd tip over backward. (She was able to sit independently at 10 months adjusted age.)
She was EXTREMELY verbal at a young age - knew all the colors, alphabet, words to numerous Christmas carols by age 2. People would actually stop and listen to her talk because they couldn't believe such a little thing could talk so well. (This is not necessarily a good thing we found out much later.)
She began walking at age 2. Again, we weren't all that concerned, as I have a nephew who didn't walk until age 2 who is perfectly ok. Considering she was a preemie, we thought she was doing ok. Besides she did a lot of "knee walking" and got around pretty well. At age 3 she was walking, but walking on her toes (another not so good sign). We began ques our local physician, an orthopaedic MD - both thought she was just behind because she was a preemie - but both thought she'd catch up. Finally a peds orthopaedic specialist diagnosed her with spastic cerebral palsy, mild to moderate.
She was always extremely emotional and also got attached to weird things (she was fascinated with a large crane doing bridge work in the area. We had to draw pictures of it, go for walks by it, drive by it, etc etc.) It was also this way with a local factory that had lots of pipes coming out of the roof. .(again, a odd thing)
The emotional issues reached a peak at preschool and kindergarten. Meltdowns all the time about school. When trying to discuss these concerns with local MD's, it was poo pooed - not a big deal, kids are emotional, separation anxiety, blah blah blah.
Our turning point came when we went to a book store in 2002, and I saw a book called "Bridging the Gap - parenting a child with a non-verbal learning disorder". .I just about dropped the book when I read the symptom list. My daughter had EVERY single one.
I made an appt with school to have her tested - the special ed dept teachers said she could do the work if she only tried harder - after all, her IQ was almost 140. What's the problem (answer: mom) I took her to a university hospital/clinic and they most definitely diagnosed her with non-verbal learning disorder, but also Aspergers - both disorders are an autism-like disorder. She fits the profile for both, most definitely.
So, for a child we brought home from the NICU with an essentially clean bill of health, she now has a diagnosis of cerebral palsy, non-verbal learning disorder, Aspergers syndrome and depression.
She will not be able to live independently.
Post a Comment