Marissa: Welcome to the 12 Months, 12 Journeys, 12 Lessons podcast. This show features monthly a different health condition or cause. The goal of the show is to learn from and uplift our guest. My name is Marissa Christina from Abledis.com.
I’m elated to welcome to this show Andi Durkin. Andi is mom to Jett, a sweet toddler beating T21 one symptom at a time. She’s sharing what has worked for her and Jett on her resourceful blog, Down syndrome: A Day to Day Guide. Andi’s desire is to help your child thrive while working to change perspectives.
In addition to the writings on her blog, she is also helping to organize the first educational cruise about biomedical intervention in the Down syndrome community, and is founding member and president of the new non-profit, Down syndrome Options, whose goal is to be the most valuable and trustworthy resource for families of individuals with Down syndrome.
It is with an open heart that I welcome to this show Andi Durkin. Hello, Andi.
Andi: Hey, Marissa.
Marissa: In the introduction, I mentioned the term T21. Can you educate us on the connection between T21 and Down syndrome?
Andi: T21 reflects that people with Down syndrome have an extra chromosome. That’s the 21st chromosome. That’s something that the typical population does not possess. That chromosome changes so many different processes and biological functions in the body so that most everything is affected in some way.
Marissa: The disease – is it a genetic condition?
Andi: Yes. It happens immediately upon conception and it’s irreversible. It’s there for the rest of their lives.
Marissa: You’re saying instead of the 46 chromosomes, there’s an extra 47th chromosome?
Andi: That’s correct.
Marissa: Let me throw out a statistic I came across. One in every 691 babies in the US are born with Down syndrome, which allows me to jump back a bit, because was this your first pregnancy?
Marissa: Talk to me about what your pregnancy was like.
Andi: My pregnancy was great. I didn’t have any complications at all whatsoever. I went to a birthing center, rather than a hospital, so I had a midwife. It was an all-natural birth – no pain medication, or drugs, or anything like that. I prepared myself by going to hypnotherapy so that I could have the tools I needed to have a calm, natural birth. There was just a flash of pain for a couple seconds.
When I got the birthing center, I was already ready to have him. I had him in less than ten minutes. The only complication was that his heart rate was going up and down, and so the midwife, instead of waiting for me to want to push, she said that I needed to push. He was delivered very quickly, and it was amazing.
Marissa: I hear that certain expectant moms are sort of fanatic. They read every book. They monitor their own personal health. They got all the schools picked out for the kid. I guess it’s safe for me to say they over-prepare for their babies. What type of expectant mom were you?
Andi: I don’t think you can over-prepare. I don’t know. I’m one of those people who read every single pregnancy book I could find, and the one I recommend most is Dr. Oz’s YOU: Having a baby. That one’s awesome.
But, yes, I read every single thing, and I was planning on having what you call a super baby, and that’s one who you teach to read early, and you teach them another language, and you stimulate them right from the beginning with sensory flashcards, and all that sort of thing. I was ready to rock and roll.
Marissa: Give me a little bit about what you saw for your baby.
Andi: We did have the heads up that we had a 1 in 27 chance that he had Down syndrome, but I didn’t really know how to deal with that. I didn’t want to be stressed out during pregnancy, so I just kind of pretended like that wasn’t true. I didn’t really prepare for a baby with Down syndrome. I envisioned a child who would be hyper-intelligent, and adorable, and possibly have some kind of artistic skills, because my husband and I are both artists. You imagine all kinds of things about how your child will be. I had all those in my head.
Marissa: With that said, you mention you threw out something: 1 in 27 chance. I kind of want to throw something out there, because the medical community consensus is that women pregnant over the age of 34 should consider genetic testing. Was it based on your age? Were you looking to get pregnant older? Why was that number being thrown out – the 1 in 27 chance?
Andi: I didn’t purposely wait. I think I was 38 when I got pregnant. I think I was 39 when I had him. I did not wait for that. It just took me forever to find my amazing husband. I was concerned. I read books about being over 35 and blah, blah, blah, but not until after he was born did I really understand why this concerned him and actually what you can do about it.
Marissa: Did your doctor suggest any prenatal testing at the time, or any testing?
Andi: Yes. It was a midwife, not a doctor. It was an initial blood test, and I want to say it was around 20 weeks or something – I’m not sure. Sometime between 12-20 weeks – I’m not sure. It was a blood test, and it gives you a little indication. When she told us it was 1 in 27, she pretty much said, “Your child has Down syndrome,” even though it’s a low percent.
I felt that we were going to have a baby with Down syndrome, but my husband, ever the optimist, was like, “Oh no, no. I’m sure the baby will be fine. I’m sure he doesn’t have it. I’m sure he doesn’t.”
In order to find out for sure, we would have to get an amniocentesis, and we don’t have health insurance. We were paying for ourselves. At the birthing center, they have it set up by payment plans, so by the time delivery comes, you’ve already paid.
For the amniocentesis, I think it was $1000, and if you wanted results, it was another $1000.
Marissa: Goodness. I did a little research on that, and I saw that amniocentesis ranged anywhere from around $1400-6000. Did they offer any assistance with the cost, or was it just, “This is it. You can pay in payments.”
Andi: It was just, “This is it,” and you can payments. We were really frustrated about the cost.
Marissa: With that said, was money the only thing holding you back from getting the testing?
Andi: No, because of the chance for miscarriage. It was a terrible time period to try to decide. What I knew about Down syndrome was nothing, and I didn’t know if my child would have a terrible life, or if we would have a terrible life because of the child. I just didn’t know. We couldn’t get any more information, because we couldn’t afford the amnio. I could have probably asked some of my relatives, but that’s forcing them, bringing them into this situation where [9:50 inaudible] is possible.
Marissa: Yes, I can understand. In your experience speaking to other moms of children with Down syndrome, if the amniocentesis happens to be abnormal, what then happens?
Andi: They just have to decide. Chances are, they’re going to get a lot of pressure from the medical community to terminate.
Marissa: Is it like counseling that you get when you’re told this? Do you know how that process works?
Andi: For me, just being at a birthing center, the midwife was very supportive. Whatever we asked, she gave us the information. She didn’t say anything like, “You should do this,” or “You shouldn’t do this.” She was just very supportive, and she looked at us like, “I feel your pain. I know this is a terrible situation – a terrible decision.”
I’ve heard from many, many other parents who, while pregnant, were under great pressure from their doctors to terminate. They were even called stupid, and not considering the other children, and that it could ruin their marriage, and a lot, a lot, a lot of pressure.
Marissa: Andi, let’s talk about prevention, because I wanted to get a sense of what the medical community’s thoughts are on prevention of chromosomal disorders. The reason I bring that up is because I had a chance to go through the Merck manuals, and in there under chromosomal disorders, I saw this small, couple sentences long on prevention. Was there anything ever brought up to you that you could do to possibly prevent the disorder of Down syndrome in your child?
Andi: No, not through the medical community, but it wasn’t something that I asked. 45% of the typical population has this genetic mutation. We all have fair genetic mutations, but this one in particular is called a MTHFR mutation. With this, your body doesn’t properly process folate. Symptoms include difficulty in having a child, difficulty in getting pregnant, and miscarriage. There are some things like fibromyalgia that’s related to it, and there are also some heart issues that you wouldn’t really find out until later.
There are a lot of clues that people, if they knew about it, would be able to know the symptoms and consider, “Hmm, maybe I have this. Maybe I should get treated for it,” especially moms who have a hard time getting pregnant. The ones I’ve talked to go to the fertility clinics, and they’re not even testing for this mutation. If they had been tested for this mutation, then they would have taken the proper folate, and then they would be much healthier, and they would be fertile, and they would probably not have a child with Down syndrome.
One major that can be done to prevent this from happening as frequently are daily practices – things that we think are healthy for those 45% of the population, even if they eat things like fortified cereals that have synthetic folic acid in it, that will mess up the folate in their body, and so they’re less likely to conceive and more likely to have the symptoms related to this mutation.
There is a lot that can be done. Taking birth control pills deplete your body of folic acid. When they tell you to take folic acid, actual folic acid is bad for 45% of the population. They need to take folinic acid, which is calcium folinate – or, more importantly, it’s a bio-available folate, which is L5 Methylenetetrahydrofolate. If they took that, then the body will be able to process that folate, and they’ll be less likely to have a child with Down syndrome. This is from studies from Dr. Jill James.
Marissa: Now that you’ve had an opportunity to go through these studies, do you believe there is something you could have done to prevent the disorder?
Andi: Yes, because Jett was tested and he has two of those mutations, and it’s genetic, so he can only get it from me and my husband. The test is only $100. I haven’t gotten tested, but I have all the symptoms. I go ahead and treat myself. It’s a very simple treatment. I take B12 and the bio-available folate. You can learn more about this at MTHFR.net. Dr. Ben has an amazing website that not only helps people with the MTHR mutation, but also older moms who are interested in getting pregnant, because everyone, as they get older, processes folate not as well as everyone else, or they just eat more. Following his protocol has helped a lot of moms get pregnant.
Marissa: That’s amazing. Let’s talk about Jett’s birth. Were you told right away that he had Down syndrome? How did that work out? If the midwife mentioned a 1 in 27 chance, did you know right away?
Andi: The thing I was worried about the most was I just wanted to hear him cry. I was like, “Okay, that’s all I care about. I just want to hear him cry.” That way, I knew that he was breathing, and that he was with us. I heard him cry, and that was like “phew!” I got to hold him and breastfeed him right away. After I had some time with him, the midwife took him to clean him up. She cleaned him up on the bed that I had him on, and for some reason, everybody was out of the room, and my husband wasn’t there, and she said, “Does anyone in your family have squinty eyes – almond-shaped eyes?”
“Well, my brother has kind of squinty eyes.” She’s like, “He has almond-shaped eyes, and he has a very round head, so I definitely think you need to have him tested for Down syndrome.” I found out two years later that she had delivered another baby with Down syndrome just that morning. Isn’t that crazy?
Marissa: That’s crazy. Talk about what that day was like for you. Were you overwhelmed with joy? Just hearing that there is a possibility, and then the midwife had said to you – did it just click? Did you feel disconnected? What was it like in that moment?
Andi: I knew immediately that he had it, but I didn’t feel any more overwhelmed by that news, because I felt that he had it the whole time. I just didn’t know. It was just something I was suppressing. I felt he had it, but – I don’t know. I was thinking, “Maybe he doesn’t. We’ll get tested.” My biggest concern was getting him to breast feed and to nourish him, so I just, again, kind of put it on hold until we would know for sure, but I did feel like he had it.
Since I didn’t have any drugs or anything during the labor, your body produces all these drugs, so I was very mellow – just kind of out of it. I couldn’t even really realize that I had a baby, because he was I think a week early. We couldn’t really figure out the real due date, because I found out, a couple months ago, that, during pregnancy with a baby with Down syndrome, you might be bigger than you should be at that time.
They kept telling me a date and I was like, “No, that does not add up.” We never really knew what the due date was. We had a two to three week window, so I was kind of surprised that he even came, and the fact that our labor was only ten minutes – I hadn’t even packed a bag to go to the birthing center. I was out of it. I didn’t even really, really realize that Jett was born, and he was mine, and he was here until seven days after he was born.
Marissa: So you’re in this fog, this haze, and that’s what I wonder – they get you all ready, you’re going to leave the hospital, and now you’re home with the kid, and then it’s a week later. Take me to that emotional state. Seven days after you’re home with your baby when you realize, I’m assuming at the time – did it hit you?
Andi: I did cry the first three weeks, because right away I could not get him to breast feed properly. He would be there, and he would suckle every once in a while, and then he would just kind of stimulate me so that milk would come out, and he would just open his mouth – no way to feed a baby. My complete focus and obsession was to breast feed him. I read like five books on the importance of breast feeding, so I was completely focused and obsessed.
I’m that type of person – I can be very obsessive. I’m very hard on myself. That was my goal, and I was not going to give up on it, and so I pushed myself. I was very, very frustrated with myself, and I had to make this happen. I was concerned 24 hours a day with trying to figure out how to get him to breastfeed properly. I would pump, and I would give him a bottle, and then the bottle would get clogged. He never cried. He never let us know he was hungry or tired.
I had to think for him for everything. He didn’t really participate. He was one of those what they call a “happy to starve” babies. He was a very Zen baby – very calm, and everything was fine. If I never fed him, he’d be fine. If continuously tried to feed him, he was fine. He was just a Buddha baby is what I called him. I felt like I had to push, and push, and push, because he didn’t. He never cracked.
Marissa: Are issues of lactation or breastfeeding usually symptoms of a child with Down syndrome?
Andi: Yes, and it wasn’t a problem with my lactation. The thing is if you’re not stimulated [23:53 inaudible]. I pumped all the time. I finally figured it out. I used a dropper – I used everything – to try to get him to do it, and eventually he just figured out, “Oh, so I kind of have to work for this.” Babies with Down syndrome usually have very low muscle tone. Jett’s muscle tone, from 1 to 5, was a 3 or 4. He wasn’t a little baby. A lot of these babies with Down syndrome have arms and legs like noodles.
I’m assuming that he did have poor muscle tone in his mouth and jaw since the rest of his body had lower muscle tone, but you couldn’t tell by looking at him. All you could tell was if you squeezed his arms and legs and such, and it just didn’t have the same give as someone with decent muscle tone. This is a fairly common problem. What if their muscle tone is low? The truth is, for some of them, you really have to teach them to do it. Some of them with Down syndrome pick it up right away. But for him, he couldn’t suckle. He just didn’t equate it with getting a reward.
Marissa: Wow. Let me ask this. What other more common symptoms will a child possibly develop as a result of Down syndrome?
Andi: For many different reasons, they may not keep their mouths closed. They may not breathe through their nose because they usually have more congestion. Their nasal passages are usually smaller. Their ear canals are usually smaller, so it’s much easier to have fluid build-up. If you breast feed them – or give them milk incorrectly – if you don’t sit them upright, then the fluid can pool in their head, and so, right away, it causes them to breathe through their mouths, and then breathing through their mouths can cause an enlarged tongue.
You also don’t get as much oxygen with mouth breathing, so you have a more likely chance for cell death in the brain. It’s a slippery slope. It’s an avalanche. I was obsessed with keeping his mouth closed and with keeping his passageways clear. That was just an instinct I had. It wasn’t because of the Down syndrome. I couldn’t even focus on the Down syndrome for the first three weeks because I had to get him breastfeeding.
That’s just early-on symptoms. Everything is smaller in their head, causing issues with congestion. They are right away much more likely to have sleep apnea. Severe sleep apnea can cause severe oxygen loss which can cause severe problems in the brain. I’m a big advocate of immediately monitoring oxygen levels and sleep. I co-slept with Jett because I had read about attachment parenting and felt that, for any child, under any circumstances, that was the best way to support their growth and development.
I slept with him on my chest, face-down, so that I could constantly hear him, and so that we were skin to skin so my heart rate and my body temperature could help regulate him. I could constantly hear how he was breathing. I was a completely obsessive parent.
Marissa: Wow. You have to be, because you’re dealing with a myriad of symptoms, like breathing. How old is Jett right now?
Andi: He’s two and a half. He’ll be three years old on February 25th.
Marissa: With that said, is the development growth pattern the same of a child with Down syndrome as a typical child’s growth pattern?
Andi: It can be, but usually it’s not. With Down syndrome, it seems to be quite common among all the parents I’ve talked to about this issue – their digestive system is not properly developed, I guess I could say. Part of the reason – and this can happen with any typical child – is that, in the hospital, a lot of times the mom is given antibiotics, or the baby is given antibiotics, or somehow is exposed to antibiotics, and those antibiotics mess with the natural flora in the gut, and so it’s harder for them to digest food.
I know babies with Down syndrome, who, if you give them sweet potatoes, out will come sweet potatoes, so you have to address the fact that they have a much more difficult time digesting. I’m using general terms – not all babies with Down syndrome are like this, but I’m just saying that for the majority of the ones I know about, this has held true. They don’t properly digest the food that they’re given. Breast milk is something very easy that they can digest, so I feel like you really have to support them right away with things like probiotics to help heal their guts and even enzymes to help them digest their food.
Enzymes eventually can heal the gut if you use it long-term and consistently. If parents give their child a store-bought formula from the doctor’s suggestion, 50% of that formula is corn syrup, so that’s not a good thing. I think if you could support them early on with making their food easier to assimilate and slowly healing their gut, I think they would be able to grow at a more normal rate, but there are a lot of things that stand in the way of that.
Jett is still very small. I think his growth is his biggest weakness, but a lot of times our kids have great difficulty – and this makes sense – in processing folate. This can cause the small head that most people with Down syndrome. Jett has that right now – I’m working on it (Please note: The most likely cause of slow growth in DS is thyroid issues. Jett’s thyroid is already being addressed, so folate is the next possible consideration). There are some studies that show that giving kids with Down syndrome much larger amounts of the folate that they can absorb – in the studies, they used a calcium folinate – and can allow their bodies to grow, and their head can grow normally.
I just started Jett on this protocol not too long ago, so I can’t see I’ve seen results with that yet.
Marissa: I’m hearing that diet and nutrition are critical. What role do you feel diet and nutrition play?
Andi: I think all of it is critical, because giving your child with Down syndrome dairy actually blocks their body’s ability to process the folate, so I can’t give him dairy. I don’t give him gluten, because people with Down syndrome are found to have very, very high levels of inflammation in their bodies, and gluten inflames then intestines and that inflames your body. I don’t give him gluten.
It’s not only what you feed them; it’s what you need to avoid as well. He’s also corn-free, and there are many reasons why. He’s also soy-free, and pretty much sugar-free.
Marissa: Wow. This is what I’m trying to understand. Is Down syndrome treated as a condition that can be cured? Once a child has it, are you treating symptoms that derive from the condition through diet and supplementation?
Andi: It’s kind of neither. The symptoms help give you clues as to what the underlying problems are. I know on my blog that I say I’m treating each symptom at a time, because that’s what you see. You see the symptoms. Jett is also borderline autistic. He’s autistic, but most of the symptoms are gone now. If he’s sitting and he’s flapping a sock next to his eyes, I’m like, “Okay, this is the symptom. What in the world?”
This is called stemming, and it’s something kids with autism do, and sometimes kids who don’t have autism do this. For Jett, it’s stimulating his peripheral vision. Okay, why is he doing this? He also does this when he’s stressed. What stresses him is constipation. So now constipation is the symptom. Why is he constipated? Is it because his thyroid isn’t being properly supported?” So then you support the thyroid.
You’re fixing each problem. You cure his thyroid condition, and then symptoms disappear. You can never cure Down syndrome, because the chromosome will always be there. You aren’t really just addressing his symptom. You’re trying to figure out what’s the underlying problem, and you address that. It’s like when you’re in pain and you go to a masseuse. They massage this area that’s so in pain, and finally that area feels great and then you realize, “Wait, now this area hurts,” and then they address that, and then you’re like, “Wait, that feels good – now this area…” That’s what it’s like having a child with Down syndrome and trying to use biomedical intervention.
Marissa: Interesting. You really can’t typically cure a thyroid, but you’re trying to manage the thyroid – just keep the antibodies down and things of that nature. You’re using biomedicals to address that.
Andi: Yes. It’s a huge issue.
Marissa: Let’s talk about biomedicals. What are they, and how do you think they’re helping Jett?
Andi: I want to say it’s not just biomedical intervention that is working great for Jett – also it’s a therapy called neurodevelopmental therapy. That addresses all his senses and reflexes. If you go to a PT or an OT and the child is not walking, then they say, “This is how to make the child walk,” and so they will basically just force the child to walk, and then the child walks funny because the underlying issue has not been addressed. Maybe the child has fluid in his ears, and if you clean the fluid, then he’ll have balance.
For Jett right now, his issue with walking is the inside of his foot when he stands up, goes down, and so the outside of his foot goes up. I get a wedge and put it on the bottom of his foot – the bottom of his shoe – and then he’s able to balance and it helps him move forward. Biomedical intervention is the use testing and watching symptoms to figure out what vitamins and minerals are off in the body so that you can figure out what systems are off so you can figure out, “If we support this system, this will start working, and then this will start working.”
Amino acids, and minerals, and supplements are all chemicals and your body is full of chemical processes, so if you can figure out what the child is lacking and give the child that supplement, then you can possibly get that process to work. I’ve seen amazingly great results with using biomedical intervention with Jett.
Marissa: Wow. Andi, we can’t just throw out biomedicals without throwing out some controversy, because the use of protocols or suggestions that are not scientifically researched are a lot of times seen as quackery, unfortunately. What controversies are there within the Down syndrome communities in regard to biomedicals?
Andi: Oh yes, there are a lot. I can completely understand parents being afraid and wary, and you should be wary – this is your child. Let’s take longvida curcumin, which is taken from turmeric – that’s the orange stuff that’s in curry and it makes curry orange. They figured out that when you take this, and it’s concentrated and added with a kind of fat, then your body can use this much better for the brain.
Some of the studies are done on mice and some on people. I don’t think there is an actual study with someone with Down syndrome. The studies I have read are double-blind placebo studies, and they’ve seen great results in cognition and all kinds of things. Curcumin does amazing things. For me, I was focusing on cognition, and this one young woman (Qadoshyah Fish, editor of Down Syndrome: What You Can Do and creator of the blog GotDownSyndrome”.) – she’s actually a sister of a child with Down syndrome – worked with Rob of Nutrivene, which is a multivitamin for people of Down syndrome, and they worked together behind the scenes and figured out that this could be an amazing treatment for someone with Down syndrome.
They tried it on her brother. It got great results, and she blogged about it, and shared this information with more people, and then more people tried it. What you do is research to find out what it can do and what kind of possible side effects there are, and so you watch. Every time I start something new with my son, I give him a little tiny bit first thing in the morning, and I see what happens. If nothing happens, then I can give him a little bit more, and I always have a target dose that I eventually want him to go to.
With curcumin, I’ve never even been able to get him to the full dose, but I started him on it when he was eight months old, and after being on it for four days, he said his first word, which was “water.” This is amazing, because I said my first word when I was seven months old. Eight months old – that’s amazing. And “water”? I was completely shocked.
You don’t see results like that with every single thing that you try, but when you see results like that, it’s like, “Whoa, like I’m going to stop doing this?” The person I’m concerned with is my child, and if this is working for my child and it’s causing no negative side effects, then this is something I’m going to continue.
But I can certainly understand why a parent would be afraid to try something that has not been tested on someone with Down syndrome in a study, and I understand why parents would be scared to try something that their doctor wouldn’t recommend.
I’ve met a couple doctors now who would recommend this, but it would be very, very hard to find one. For me, I’m not going to wait eight years, or ten years, for a study to come out to say, “Oh, longvida curcumin may help your son speak better and think better.”
Marissa: Well said. Andi, what drew me to interview you was your passion to give your son the best quality of life. What are your hopes for Jett as he moves into adulthood?
Andi: First of all, I want him to be happy. Like I said, he is mildly autistic, so until I gave him this one supplement called Neuroprotect, he did not smile and did not laugh. Now he smiles and laughs. My biggest hope for him is, first and foremost, to be happy and I expect that he will be able to function in society, and take care of himself, and be someone who someone can fall in love with, and will be able to fall in love with someone else and have a fulfilling life.
Marissa: That is beautiful. I almost got a little teared-up there. I want to give you an opportunity to talk about your non-profit organization. Can you share about what Down syndrome Options is and what you’re trying to achieve there?
Andi: This is a new organization. We’ve been working together for less than a year, and we’re trying to put together all the options that we think are viable and valid enough to look into for a parent. Everything doesn’t work for everyone, so that’s something that we stress – that your child in an individual. To us, we see Down syndrome as a spectrum. Jett’s muscle tone isn’t that bad, but for someone else, their muscle tone really needs a lot of work and consideration.
We want to take that information and make it available to parents in a very easy to understand why. That’s why I started with diet with nutrition, because that’s something that’s easy to explain, and people can readily accept that. That’s kind of all I have on there right now, but I’m working with many other people on many other articles to give parents more information, support, and understanding.
The next I’ll be posting is about hypothyroidism and how it works hand in hand with having Down syndrome. I just try to give information about things that we feel are more viable and worth looking into. It’s something that’s growing and growing. We’re getting more and more different kinds of doctors involved, and the amazing thing is that they are finding us and sharing information that they have, and we share information that we have, so there is a lot of information sharing behind the scenes trying to get perspective together.
There is just so much that needs to done and so much that’s going on behind the scenes before we can present it to the parents on the website. Our goal is to get all that information out there in a way that parents can understand so that they can read it without fear and make the decision as to whether or not they want to try this with their child.
Marissa: That’s awesome. How can people learn more about your non-profit?
Andi: The website is www.DownSyndromeOptions.org. You can join the community, and you can read what I have posted on there now, and expect that more will come. We’re working on like 20 articles right now. It’s very time-consuming, and we’re really, really trying to put it in the best way possible so that parents can understand and not feel too overwhelmed, and not feel frustrated.
We want to give parents the tools so that they can be the ones who are responsible for their child’s health and be able to present this information to their physicians so they can talk about it while understanding what they’re talking about.
Marissa: Andi, I’ve uncovered so many lessons throughout this journey. Is there a lesson or message you want to share with the listener?
Andi: It is very important to go to the doctor and get your doctor’s opinion. I want people to remember that the doctor is providing a service and you’re the consumer. You can choose to accept that service or find service elsewhere. You are the one who is in charge of your child’s health, and in making these decisions, it’s very important that you realize that that person who is standing in front of you saying this is your best option may believe that, but there may be some information they’re not aware of. The most important thing is to explore all your options.
Marissa: Andi, thank you for challenging me these last two months, and for being open to educating myself and others about Down syndrome. I’m wishing you and your family – little Jett – all the best this life has to offer.
Andi: Thank you so much, Marissa.
Marissa: Thank you. If you want to learn more about Andi, please check out her blog, Down syndrome: A Day to Day Guide. If you want to learn more about Andi’s non-profit, Down syndrome Options, please check out www.DownSyndromeOptions.org. Thank you, and much love.