On Sunday, I took Yirmiyahu to the eye doctor for an exam and was happy to hear that his eyes look great! I don’t have to go back for another year.
Then this morning I took Yirmiyahu to the pediatric hematologist for a follow-up visit.
A number of people have asked me why he needs to go to a hematologist (a hematologist is a blood doctor). The reason is that when he was born, he had an extremely high leukocyte count – 95,000. About 10% of babies with Trisomy 21 are born with this condition, known as transient leukemia. The hematologist told me, after we got the results of the genetic testing, that there had never been a question in his mind that Yirmiyahu had T21 due to his elevated leukocytes – he said it’s a medical phenomenon seen only in the Down syndrome population. Yirmiyahu received very strong antibiotics to counter this within a short time of being born, and we were very happy to see his leukocyte count go down to the normal range of 20,000 within a few days.
However, children who have transient leukemia are at a much higher risk for developing regular leukemia. As a result, we are in regular contact with a pediatric hematologist to be sure that his blood work continues to be okay. The purpose of this is that if, G-d forbid, there were signs of a problem developing, it would be caught at the very beginning. When leukemia is treated in the beginning stages, the prognosis is excellent.
Today’s appointment was super fast – now that I have the rhythm down of what paperwork to get when, it goes much faster than the first visit. Basically we just do blood work, wait ten minutes for the results, and show it to the doctor. But with all the traveling and waiting for buses, it’s a six hour round trip journey. But the important thing is that everything is okay. We can now extend the time between visits to 3 months, and he was able to schedule my next visit to coincide with the day I have another appointment at the same hospital, which is really nice!
I feel like I’m finally at the end of all the initial testing and medical follow-up we instructed to do – but in January, we start the follow-up cycle, since for a number of tests we were told to come back after six months!
This is a fifteen minute video made by three typical kids and their three friends with Trisomy 21. In it, they share about the common issues to help others understand what Trisomy 21 is, and how it affects their friends. Though this was geared to be by kids, for kids, it’s suitable for adults as well as kids of all ages. I think it would be great for parents to watch this with their children so they have an understanding when they see someone with Down syndrome about what to expect – and the message is, we’re all much more similar than we are different.
I really enjoyed this video! Take a few minutes to watch it, and let me know what you think – was this informative? Did you learn something new, or get a different perspective on Down syndrome?
Before he was released from the NICU after birth, Yirmiyahu was given two hearing tests. He passed one but failed the second one, and though the technician said that him squirming might have been the cause of the poor test results, we needed to have another test done to check it out.
It was quite a wait from the time I made the appointment until when we were seen, and a couple of days ago we went to our appointment at the hospital where he was born to have the testing done. I like when I can go back to somewhere familiar, but an 8 am appointment means I need to be on a 6 am bus, so it makes for an early morning.
The instructions were not to feed him or let him sleep for two hours prior to the test, which wasn’t very realistic for such a young infant. I tried to give him a full bottle at 5:30 am but he was way too sleepy for that, and travelling by bus in a baby wrap is a good recipe for sound sleep! While I was waiting to have the test done, I gave him the last couple of ounces in his bottle, and the technician going by chided me. I told her, he can either be sleepy or hungry but he can’t be both. It ended up working out well since he had to swallow a syringe full of syrup to make him fall asleep, which he hated the taste of. I got it into him by giving a little squirt from the syringe, then quickly letting him drink from the bottle to wash it down – we did this a few times until he finished the syrup. Even the technician approved!
Once he was asleep, the testing went really quickly. While I held him in my lap, electrodes were attached to his forehead and above his ears, a tiny microphone inserted into his ear, and then different sounds were made while the computer recorded his brain’s response to the sounds. Amazing what technology makes possible!
I was delighted when the doctor finished the test and told me Yirmiyahu’s test results were perfect! I know that hearing is an area of concern for a lot of babies with T21 so this was really a relief. When I took him for an ultrasound on some internal organs a few weeks ago I was told everything was fine – and then I showed the results to our pediatrician – she told me it wasn’t reassuring for a technician to say nothing was there when something had been there before, so I need to take him to yet another city to have a repeat ultrasound done in a different office. But this time, the results are conclusive and there’s no need to retake the test. We have six months before we need to do another hearing test, and I’m so happy for the good news!
Today is Day 30 of 31 for 21, a blogging effort to promote awareness of Trisomy 21.
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Several weeks ago, a family on one of the T21 lists that I’m on shared with us that they had been featured on ESPN. In this fifteen minute video, the father shares with tremendous honesty about wanting to abort his daughter when they learned she would be born with Down syndrome, and his journey towards embracing her as perfect as she is.
Sorry for the long delay in posting – my ds13 returned over a week ago from a month long visit in the US, and brought me a new (used) laptop with him. This was something I had been anticipating with great eagerness since my computer has been out of commission for two months. Ironically, the day he brought it home and I turned it on to use it for the first time, our internet service was cut off – when we registered for our phone and internet service, we authorized automatic deductions from our bank account. The internet service provider broke off from the phone company and now needs a separate authorization, but didn’t tell us – they just cut off our service! We figured out what happened when we tried to log on and got a message from the internet service provider informing us that we needed to take care of payments to have service. That took a week. It is so nice to finally be online and to have a computer again!!
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Today is the Day 29 of the 31 for 21 blogging effort to raise awareness for Trisomy 21, also known as Down syndrome.
When I was in the NICU with Yirmiyahu, after the baby in the isolette next to him died, the next baby placed there was a very tiny preemie. He was born at 23 weeks, and being able to see what a baby that young looks like was amazing. He was so, so tiny but fully formed – he looked like a miniature baby. The length of his entire foot was probably about equal to the tip of my pinky finger. Looking at him and then at my baby, I thought about how babies at 23 weeks of pregnancy can still be legally aborted, and that most babies with T21 are aborted. Yirmiyahu is lucky to be one of just ten percent of babies with T21 who make it to this world.
When my computer went down a couple of months ago, I lost the sites I had bookmarked so I did a search to try to find a particular T21 site again. In the process, I came across a board for mothers who had terminated or were planning to terminate their babies with Down syndrome. It was difficult to read about so many women making this decision, and it was clear that this was a painful decision for many of them.
Something that many women wrote is that they felt it would be selfish of them to let their child live, to suffer from whatever challenges he would be born with. One woman who aborted her baby made a statement that I found very insightful. She had chosen to abort her baby even though there were no obvious health challenges in the prenatal screening other than T21, and wrote that she believes Trisomy 21 isn’t incompatible with life as much as it’s incompatible with society.
Isn’t that profound? And isn’t it true? The difficulties for our children with T21 don’t come primarily from the state of being born as they are – yes, there are physical and cognitive challenges that they will face. But being faced with challenges is something we all can look forward to – not one of us will go through our lives without significant tests in some areas. The real difficulty for a person with a disability comes from having to live in a world in which they are seen as inferior and incompatible. As a society we are so uncomfortable with differences, that many people see it as laudable to prevent a child who will be too different from being born.
I believe that something that helped me to easily accept the news that our baby had T21 was being the mother of nine other children of a range of ages. During the last nineteen years, I’ve learned that just every child is going to have his challenges, no matter how high his IQ or how robust his health. A typical child may be made fun of, struggle with self-esteem, have learning difficulties – just because they’re born typical is no guarantee of their performance at any point in life. However, when you have a typical baby, you’re congratulated – no one feels the need to tell you right after you’ve given birth that your child will one day face some kind of difficulties, though this is absolutely a fact. But when you have a baby with T21, instead of congratulations you get warned about all of the probable issues upfront by doctors with sad faces. This can be very depressing if you believe that doctors have all the information and all the answers. I don’t believe that doctors can know the potential of any child, and since I know every child will have challenges, hearing about our baby having some more easily predicted concerns didn’t frighten me.
The clear message that doctors project, whether spoken or not, is that your child is a problem. I’m not surprised that so many people choose abortion when faced with this attitude. But maybe our children being born a little different isn’t really the problem? Maybe the problem is a world in which it’s normal to believe that that people who are different don’t deserve to exist? Maybe children – and adults – with differences are sent to this world in order to make the world a more loving and accepting place, to remind us that we’re all inherently the same even when we look different?
When I was pregnant, I read a blog in which someone shared about someone who had been told that their baby had markers for T21 and aborted her. When the procedure was complete, they learned that their baby didn’t have Down syndrome, and the grief that they had aborted their healthy child was indescribable. This blogger wrote, but what about if their baby had T21? Would it then have made it more okay to have killed her? Does a child with Down syndrome deserve to live less because he may have health issues or cognitive delays at some point in his life?
These children are our reminder that every single person has value and a purpose in being here, though their beauty and gifts are not often enough recognized in a world in which differences aren’t welcomed.
Today is Day 22 of 31 for 21, a blogging effort to promote awareness about Trisomy 21, also known as Down syndrome.
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After Yirmiyahu was born and I shared the news with people that he has Trisomy 21, I felt so encouraged to hear that there were significant resources in Israel to support his development. Now that he’s three and a half months old, I’m feeling much less supported and encouraged.
I’ve been to plenty of doctors for Yirmiyahu – I’m not going to enumerate them because I think I have in the past! I’ve also taken him to the Child Development Center, where he’s supposed to get supplemental therapies. Before the holidays he had one physical therapy appointment, and I have another scheduled for next week. While I appreciate that, I kept feeling that there should be a lot more early intervention happening.
I haven’t been passively waiting for outside help – I’ve been trying to put together a neurodevelopmental program for Yirmiyahu on my own. I don’t mean to sound whiny, but I really don’t think I should be needing to reinvent the wheel and figure out everything myself- I’m not living in a third world country and Down sydrome is something there’s a lot of experience with.
I spent weeks trying to reach the national support organization for parents of children with T21 – no luck. They never answered or called back in response to my repeated messages. I tried to reach the clinic in Jerusalem that specializes in Down syndrome – no luck. Again, no one answered or returned my calls. Finally last week I went into the local health clinic to find out about getting services for Yirmiyahu, and was told I need to speak to his pediatrician (who I’ve seen a number of times already and never suggested anything). I made an appointment for the next morning.
That night, I called someone in Jerusalem with an eleven year old son with T21 to find out what is normal – maybe my expectations were totally off? She told me the norm is that from the time the baby is very little, he gets therapy at least three times a week – once speech therapy, once occupational therapy, once physical therapy. I also learned that she was able to successfully breastfeed her baby exclusively thanks to the exercises the speech therapist gave her. Nice.
Now armed with the knowledge that others in different parts of the country in the same situation as me are getting significantly more services, I went to see the pediatrician. She told me that the Child Development Center here is perfectly fine and if they don’t offer more services, it’s because it’s not necessary. Then she demanded, “What kind of occupational therapy are they going to do on a baby so young?” and without giving me a chance to answer, told me that there’s no such thing as occupational therapy for a three month old.
So I went to go see the doctor who is in charge of the Child Development Center. She reminded me that I had already had an appointment in the beginning of September for physical therapy and that I had another one scheduled for the end of October. Yes, but doesn’t once in seven weeks seem….well, pathetic? Apparently not.
She told me that she will meet with me in a month to discuss this because she doesn’t want me to feel deprived or to think that I’m not getting services I should be getting. Personally, I think she should worry less about my feelings and more about making sure my baby gets the support he needs. When I told her that in other parts of Israel parents of babies with T21 are getting multiple therapies a week, she told me that a baby should only have one person working with him and that’s the physical therapist.
This was so frustrating. Despite it being well-known how important it is to help babies with T21 very early on in their lives, somehow this isn’t happening here. I felt like I was in the Twilight Zone when I was talking to both of these doctors. My partial comfort is that I’m working with Yirmiyahu on a few developmental areas and I hope he’s not suffering for lack of support, but it would be nice to get some support from trained professionals.
Later that day I was happy to get a call from the Feuerstein Institute in Jerusalem, which specializes in brain development and rehabilitation, and they’ve had a lot of success working with children with Down syndrome. I had been trying to reach them for several days and left a couple of messages, but due to my experience with not having my calls returned, I wasn’t expecting to hear from them. It was so validating to speak to someone there who told me this is absolutely a critical time to start working with him. She told me the person who works with babies will call me and we can schedule an evaluation – this is private, however, and I don’t know how long their waiting list is for infants. (I’ve heard that it can be months for adults.) Hopefully we can get him seen soon.
You know what the doctors seem to be most worried about? His weight. Although he’s gaining weight nicely now that he’s started supplemental bottles, he still remains under the average growth curve. (I pointed out that on the T21 growth chart he’s in the fiftieth percentile but was told that’s not relevant. Why is there a different growth chart for babies with Down syndrome if it’s not relevant??) My Israeli friend laughed when I told her about this and told me this is what they tell most mothers in the country, that their babies need to gain weight. I suppose that’s reassuring but what would be more reassuring is if I could actually get some meaningful assistance for my baby!
Today is Day 21 of the 31 for 21 blogging effort to increase awareness about Trisomy 21.
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(Edited to add: While the concept is great and it worked well, I can’t recommend it. The silicon nipple lasts for just a month before cracking; I bought several bottles and used a number of the nipples included and this was my experience with every single one of them. This is something that shouldn’t happen so fast and makes this bottle a frustrating and expensive option. With our second baby with T21, I used the MAM bottle, which also encouraged a strong suck, helped the baby keep his tongue in his mouth, just 40 shekels for the bottle (versus 160 shekels) and the nipple never cracked.)
Every time I go out with Yirmiyahu and pull out his bottle, I get curious looks and if the person is close enough to me, they ask me about it. Here’s why:
It looks a little bit different, doesn’t it?
After spending weeks working to get Yirmiyahu to be able to exclusively nurse, after a couple of weeks I saw that he didn’t seem to be getting enough. I still don’t know why this is – maybe I didn’t have enough milk, but I think it’s something else. Unfortunately I don’t have any professional feedback on this so I’m just guessing. Anyway, since my efforts to remedy this on my own weren’t working, I agreed to the suggestion that we give supplemental bottles.
The bottles were great – I was able to see how much he was getting and that was reassuring, as was seeing the return of wet and dirty diapers. But something more troubling also presented itself. When I had taken him to the doctor as well as the physical therapist just three weeks before, they had both commented on how good his mouth closure was. Since infants with Trisomy 21 have hypotonia, the lack of muscle tone can make it harder for them to keep their tongue in their mouth. I credited Yirmiyahu’s good mouth closure to nursing.
However, within two weeks of a regular bottle, his tongue began sticking out a lot more frequently. This isn’t a surprise, since sucking on a bottle requires a baby to thrust his tongue forward, and nursing requires him to pull his tongue inward. But surprise or not, it was disturbing to me – was this the price I had to pay to help him gain weight? I was feeling stuck between a rock and a hard place, when a friend suggested the Haberman feeder.
The Haberman feeder was created for babies with feeding difficulties, but I think it’s a good choice for all babies. It’s the only bottle that a baby has to use his mouth in a similar way to breastfeeding. There are a number of benefits to this, but the one that most interested me was that it would help Yirmiyahu build his oral motor strength, just like nursing.
Now, getting him to drink from this wasn’t so easy. While he could finish a five ounce bottle in twenty minutes or so, it took him four hours to drink the same amount the first time we tried this bottle. This was problematic because we needed to get his weight up, and for a few transitional days I gave him feedings from regular bottles as well as from the Haberman to be sure he was getting an adequate amount to eat, while giving him a chance to learn how to eat from this.
However, we got through that period and have been using just this bottle since then. Just as quickly as we saw his tongue begin to stick out more, we’ve seen it go back to how it was before. This would take a lot of speech therapy to overcome if we stuck to the regular bottle, so it’s a big savings in time and energy!
Another benefit is that excess air being gulped in along with the milk is eliminated due to the bottle design. Yesterday I happened to sit down at the park bench next to the school nurse and she asked me why we didn’t burp Yirmiyahu a few minutes after he started drinking his bottle. I hadn’t consciously thought not to burp him, it’s just that he didn’t need it.
Here’s a short clip of Mandy Haberman, the designer of this bottle, showing how it works:
The disadvantages to this bottle that I’ve experienced are:
– Cost – it’s not cheap! We spent 160 shekels on this, which at the current exchange rate is over $40. Contrast that with bottles that are considered upgrades/higher quality and priced at 40 – 60 shekels. (Updated to add: two nipples are included with the bottle. Since the nipple lasts only for a month before cracking and becoming unusable, this dramatically adds to the cost of using this bottle.)
– No lid – when you travel with this bottle, there’s no lid to prevent spilling. I haven’t found much leakage to be a problem as long as there’s no milk in the top part of the bottle, since it required suction to get it out. But when there is milk in the top reservoir, I just wrap a cloth around it in the diaper bag to prevent any leaking and that seems to work fine.
Today is Day 14 of 31 for 21, a blogging effort to promote awareness of Trisomy 21.
When my husband was telling his parents the news that our new baby had Trisomy 21, he made some kind of comment like ‘he’s a Down syndrome baby’. I really try not to interrupt his private conversations but this bothered me so much that I had to comment, and I loudly whispered to him, “He’s not a Down syndrome baby, he’s our baby with Down syndrome'”.
Does that sound like I was reacting to silly semantics? To me it didn’t feel like that. I felt the terminology was presenting our baby as a problem and was impersonalizing who he was (obviously this wasn’t dh’s intention). You don’t define a person by what is wrong with them. You don’t call an infant with strep a ‘strep baby’ – because that’s not accurate. You don’t call a toddler with leukemia a ‘cancer child’. You don’t call an adult a ‘heart disease man’. It’s really obvious when you use those examples how ridiculous it sounds.
And yet when it comes to T21, it’s normal for people to say things like, “he’s a Down syndrome boy” or “she is a Downs”. No, no, no. Just tonight I was speaking to someone on the phone who kept telling me about different people she knew with links to Down syndrome and saying things like, “Her daughter was Downs” until I felt like I had to say something. I know that people don’t mean to be offensive or hurtful, but there’s a much more appropriate and less demeaning way to refer to others. There’s a huge difference between referring to somone with T21 as someone who has Down syndrome, or someone who IS Down syndrome. A few days after my whispered comments to dh, I learned that it even has a name: people first language.
People first language means that when you speak about a person, you first speak about them followed by a mention of their disability or ‘issue’ – who they are is their primary defining characteristic, and their disability is just one aspect of who they are. It’s true that it’s a bit more wordy to say ‘a baby with Down syndrome’ instead of a ‘Downs baby’. But our words shape perceptions and reflect our understandings. Isn’t it worth a couple more syllables when we speak to focus on seeing people for who they are rather than what they have?
Today is the tenth day of 31 for 21, a blogging effort to raise awareness about Trisomy 21. Click here to check out other bloggers who are participating!
We all have a picture of what children will Down sydrome look like. Most of us think we know what we can expect of them socially, academically and professionally. I always made a point to smile at and thank the young man with T21 who bagged my groceries at the supermarket and thought how nice it was that the store owners were so progressive about hiring people with disabilities. In the last three months, my estimation of what individuals with T21 can accomplish has shot up.
Tim Harris is a young man who was a high school homecoming king, a college graduate, and is now the owner and manager of his own restaurant – and he has T21. Watch this beautiful 2.5 minute video or read here to learn a little bit more about this young man’s accomplishments.
I loved watching this! People like this help change our communal expectations regarding individuals with T21. And for me, as the mother of a baby boy with T21, it gives me tremendous hope and encouragement.
So many times when people have a situation in which something has gone wrong, knowing that they did something wrong that added to the problem exacerbates their pain. I’ve read several accounts of women who had babies with Trisomy 21, and they all went through a period of blaming themselves for something. We moms can always find something to blame ourselves for! Whether it’s not eating well or taking prenatals during pregnancy, feeling guilty about their negativity or ambivalence when learning about T21 or crying and being upset after the baby was born, there are lots of things that moms later look back on with regret.
I’ve thought a number of times about how grateful I am in this regard. I have a tendency to have high expectations of myself, which makes it easy for me to feel like I’m not doing enough for my children. So it’s especially amazing that regarding Yirmiyahu having T21 that I’m able to accept what I did throughout pregnancy as having been enough.
I was thrilled when I became pregnant, and although there are definitely some discomforts that come along with pregnancy, there wasn’t even one minute that I wasn’t grateful for my pregnancy. My husband often remarked about how consistently positive I was, even at the end when I was having a lot of sciatic pain. I had conversations in my mind every single day with my baby, telling him how much I loved him and later on when I started having premonitions about the baby having T21, added in the message that we loved him as he was. I had a pervasive sense of emotional well-being and consistently positive thoughts about life in general and towards our baby.
On the Weston Price site there’s an article with a theory that older mothers have babies with T21 because of pregnancies that are close together, leading to mothers who are nutritionally depleted. My youngest child was over three when Yirmiyahu was born, so I had a solid block of time to build up my nutritional reserves before he was conceived and I don’t have guilt over this possibility.
I’ve been eating according as much as possible according in line with a traditional foods approach for years, and this pregnancy I was especially careful about what I ate. Except for a few chocolate bars, my diet was excellent. I took cod liver oil and early in my pregnancy, ate liver regularly for the iron. In addition to this, I took homeopathic cell salts. My general position is that it’s better to eat good quality real foods and supplementation has always been on the back burner for me, so it was unusual for me – a first, actually – that in addition to the above I took prenatal vitamins during this pregnancy.
My birth experience was traumatizing (for my husband, too) but one part of the unpleasantness that I’m grateful for was the extensive fetal monitoring at the hospital. I haven’t had this kind of fetal monitoring since my second birth, and it’s not something that added positively to the experience, but the monitoring consistently showed everything progressing normally. Yirmiyahu was born very suddenly at home (if you’re wondering how I labored in the hospital and then gave birth at home, you can read both parts of the birth story, here and here) and wasn’t breathing, and when I later looked back on this I didn’t have to wonder if this was a problem that could have been anticipated and avoided – it wasn’t and it couldn’t.
When we were told the news that our baby had T21 a few hours after he was born, along with the list of other things that were happening medically, it took me a very short time to process. There are a number of reasons for this- I’ve shared about a couple of aspects of that, and another big factor is that as a mother of a large family, I know that every child comes with their issues. I know right after finding out is a really hard time for most people and I feel very lucky in this regard that I was able to be happy with our baby as he was from the very beginning. He was loved totally and fully from conception through birth and beyond, and as a mother I feel a lot of gratitude about that.
