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Once you get over the initial Down syndrome diagnosis, you realize that you are going to be bringing this baby home, and he/she is going to need lots of STUFF. The good news is, for the most part, babies with Down syndrome need the same baby supplies as any typical baby. The super cute baby clothes, blankets, and room decor won’t change (unless you want to throw some Lucky Few arrows into your design). However, there are a few items that are more important for babies with Down syndrome due to anatomy and development. Here is a list of the baby essentials you will need for your newborn with Down syndrome.
1. A Really Great Nose Suction
2. Saline Spray
Before using any kind of nasal aspirator, you will want to loosen the mucus with saline spray. There are plenty of these on the market, but we have always used Little Remedies. They also sell a Little Remedies New Baby Essentials Kit that also includes fever/pain reducer, gas relief drops, gripe water, Boudreaux’s Butt Paste, and a nasal aspirator.
3. Humidifier
I had a humidifier for my two other children that we rarely used, so I thought that I didn’t need to get one for Ellie. Wrong! The humidifier has been a life-saver in terms of helping her breathe at night, and it is something that we still use every single night with her. We have tried not running it a couple of times, and she always wakes up completely congested the next morning. Because we use it so much, we have ended up with a couple different ones.
The Crane animal humidifier is really cute and works well for occasional use, but it couldn’t hold up to our daily usage for years. It was also incredibly difficult to clean. Overall, there are better humidifiers on the market.
Once our Crane died, we got a 3-liter LEVOIT. This one has worked well and is much easier to clean. Because humidifiers can breed mold, you really need to clean them once a week with white vinegar. Another bonus is that this one is small enough to take with us when travelling.
4. Chest Rub
Another must-have that helps with all of the congestion is a baby chest rub. We have used Maty’s All Natural Baby Chest Rub since Ellie was three months old, and it really works to help ease her symptoms. Any time she has the slightest hint of a sniffle, we put this under her neck and on her feet, and it definitely helps her breathe better while sleeping. This particular rub uses eucalyptus, lavender, and chamomile essential oils. Do note that it is not for babies under three months.
5. Oxygen Monitor
Owlet
This one is controversial, but I loved having an Owlet for the first year of Ellie’s life. I was already nervous about her oxygen levels, and this gave me assurance that she was, in fact, breathing throughout the night. It also alerted us to the fact that her oxygen was low on several occasions, which prompted a couple of hospital stays and sped up our ENT/sleep study appointments. Ellie did not have labored breathing, and this device is the only way that we knew her breathing was abnormal before ending up in the hospital for oxygen that had actually fallen into the 70s. All of this led to us being able to bring oxygen and a hospital oxygen monitor home for emergency use.
(Side Note: You can still get a Smart Sock outside of the US and Canada, and the Owlet company has stated that they are trying to increase the capabilities of the Dream Sock with a de novo submission to the FDA so that parents can have better monitoring capabilities without a prescription.)
In complete transparency, I should also mention that many reviews complain about false alarms and connectivity issues. We experienced some of this, but because Ellie was actually having breathing issues, it was still worth it to me to have the device.
After the FDA fiasco, Owlet did also apply for FDA clearance on a new device, the Babysat, which should appear on the market at the end of 2023. This one is, however, a medical device, and will need a prescription from a doctor. I am not sure what the requirements for a prescription would be, but since 53-76% of babies with Down syndrome have sleep apnea, it’s worth a mention to your pediatrician/ENT.
Finger Pulse Ox
There are other new oxygen devices on the market now, so if oxygen is a concern, you might want to do a search to figure out what would work best for you and your baby.
6. Play Mat
One of the first items that we used in both our OT and PT sessions was a baby play mat. Like all babies, some of the first skills that Ellie had to master were lifting her head, reaching for objects, and rolling over. The baby play mat helped with all of these.
Any play mat really will do, but I listed three popular ones below. The first one is Lovevery; it is a favorite of many people but also really expensive. However, it does transform into a tent as your child gets bigger. The other two are Fisher-Price and Baby Einstein, which are more reasonably priced.
Bonus: A baby mirror can also help babies lift their heads as they try to see themselves.
7. Easy to Grasp Toys
The first toy that Ellie ever learned to grab was the Manhattan Toy Winkel Rattle and Sensory Teething Toy. We used this in both our OT and PT sessions, and our PT mentioned that it was the one toy that all the babies she worked with absolutely loved.
8. Breathable Sheet/Mattress
This is not something that everyone will need, but Ellie was an early roller and loved sleeping face down. It was terrifying! We ended up ditching her crib sheets and switching them out for this Lullaby Earth Breathe Safe Mattress Pad. It is certainly not soft, but it eased my worries about her suffocating herself. (Note: Do not put a sheet over the mattress pad; that would defeat the purpose of the breathable fabric.) We did not buy the actual Lullaby Earth Breathe Safe Mattress because we already had our mattress when this problem started, but it comes with rave reviews.
9. A Range of Bottle Types
With my two typical children, finding a good bottle was a matter of what was easiest to clean or what didn’t leak. For Ellie, however, it was different. Hypotonia affects all muscles, including the hundreds of muscles in the mouth. Because of this, latching on in breastfeeding and even finding a bottle nipple that works can be a challenge. It seems that no two babies with Down syndrome are exactly the same in this area, so we ended up trying lots of bottles before finding what worked best for her. I would suggest not listing a full supply of bottles on a registry and instead trying singular bottles of many different brands while trying to determine what is best for your baby. One way that we did this is through a Babylist bottle box. The box came with five different types of bottles for us to try before determining which worked best for Ellie. If you’re dying to know which we chose, it was the Nuk due to it’s flat nipple.
When your baby is ready to graduate from bottles to the sippy cup, most occupational therapists will start him/her on the honey bear cup. This is exactly what it sounds like — a honey bear with a straw in it. The honey bear cup is easier for our babies to use because they can squeeze the cup to get liquid instead of having to use all of those mouth muscles to suck.
10. A Large Baby Bathtub
For the most part, registering for your newborn with Down syndrome is the same as registering for a typical baby. Once you have your essentials, you can add all of the cute clothes, toys, and decor!
Add any additional baby gear that was helpful for your newborn with Down syndrome in the comments below! And if you are a new mom of a baby with Down syndrome, you might be interested in the following posts:
