Breastfeeding and Down Syndrome | My Story- Debra & Xander [Guest Post]
Guest Post by Debra Brahim
I remember the day my son was born.
He was born on May 8th, 2015 at 8:26am weighing 6 lbs 1 oz and measuring 18 ¾ inches long. For the majority of my pregnancy, everything was great -baby and I were both as healthy can be. Towards the end of the pregnancy, however, our doctor informed us that there was possibly an issue with his growth, and as a result, we planned a Cesarean birth.
As soon as he was born, he cried; a sound that any mother wishes to hear. My husband and I were so joyful, soaking in every moment that our son was in our arms.
Once we got back to the recovery room, we enjoyed getting to know our baby. His older brother was able to meet him our family all came up to visit. We all were excited.
As the day went on the nurses and doctors did the typical routine screening. They took him to the nursery for a short time to confirm everything was well, and that night - one I will NEVER forget - my son got to sleep with me on my chest.
It was wonderful.
He sounded so peaceful and quiet. I don't know when I fell asleep exactly, but when I woke up, he was not in my arms.
I panicked for a moment, but the nurse reassured me that he was fine and that they were doing routine continuous monitoring. As that second day went on, my friends and family members came and left, yet they still hadn't brought my son back from the nursery.
I remember asking the nurses multiple times if everything was okay and each time they reassured me, everything was fine, that I would see him soon.
That evening, instead of bringing me my baby, the nurses came to my room alongside a doctor who wanted to talk with me and my husband.
We all set down in the room, and he gave us the new- Our son possibly has Down Syndrome.
He told us what lead him to that assumption, and the 'clues' he found: single crease in one hand, a wide tongue, and flattened nose bridge. Additionally, he was having trouble breathing on his own due to low muscle tone in his lungs and body. The suspected he had ASD (atrial septal defect otherwise known as a hole in the heart) so they did testing, which included taking blood. Results came back fairly quickly, and his ASD was confirmed.
I was not in shock at that moment, but I was definitely scared.
Not scared about the Down Syndrome diagnosis, but about other health concerns related to my son's heart and lungs. Neither my husband nor myself knew much about DS so we spent the next few hours researching everything we could.
My son spent his second night, and the next few days in the NICU because of his lack of oxygen intake and a low heartbeat rate.
Every day that he was there, I was with him. There wasn't room for me to stay in at the hospital, so I had to stay at the Ronald McDonald house. My husband returned home to take care of our oldest son, so I spent the whole time there alone.
When I was pregnant, I had made the decision I was going to breastfeed my son but now that he was here, I was not sure how to approach because of his low tone. My son was not able to latch but I knew I didn't want to let that deter me. Instead of nursing at the breast, I exclusively pumped milk for him, and the nurses would feed him through an NG tube.
I would pump every hour to help build my supply, and anything I expressed I give him.
Not once did he ever get formula.
The nurses were really supportive, and the lactation consultant helped boost my confidence that I was doing things right. She even taught me some little tricks to get my baby to latch on wanting the milk!
We also had a physical therapist that came by every day to help teach my son how to breathe on his own. She too was immensely supportive of breastfeeding and helped me to get my son to latch on to my breast to feed him. She gave me guidance on how I could help my son use and build muscle tone once we were home.
We started with his mouth to get him strong enough to latch on consistently, and It was a fantastic learning experience for me and great to watch him get stronger!
Two and half weeks after he was admitted into the NICU, it was finally time to go home! At the time, we were staying with my parents in Florida.
When we arrived at my parent's house, we immediately had to prepare for my husband to return on deployment. Luckily he was able to stay for a whole month on emergency leave, and during that time spent time as much time together as a family.
During the first 2 months of us being home, I learned so much about my son, and what to do for him that would benefit him best as he continued to grow.
We had worked continuously on breastfeeding, and after some time, he learned to latch correctly. After a bit more time, we were able to breastfeed without the nipple shield we had been using.
Eventually, it was time for the kids and me to return to our home in Georgia. My husband had returned on deployment, and once again, I had to readjust, but this time without my family near.
I would like to say it was an easy adjustment, but there were many difficult times. It felt like I was a single mother living on my own with my two children.
This was my new reality.
Alone, taking care of a 3-year-old and newborn with diagnosis of Down Syndrome.
I had to go to lots of doctor appointments. He needed to see many different specialists and therapists. I had to meet with a case manager to get my son into an early intervention program to ensure he got all the therapies he needed.
It was well worth it to help him, but it was a lot, and it felt as though appointments took over half of our lives.
But we continued to breastfeed through it all- for 18 months!
My initial goal was to breastfeed for at least 1 year, then 2 years, however at 18 months he showed signs that he was ready to wean.
I think we were both ready to be done.
Even after he stopped nursing directly at the breast, I pumped and gave him my milk in a sippy cup with a straw. He adjusted pretty quickly to drink from sippy straw cups, and my body naturally adjusted to the decrease in nursing.
At the end of our journey I realized I had learned so much- so much about breastfeeding, about my son, his diagnosis, and my strength.Breastfeeding my son was very different from my original expectations and that in of itself was a wonderful learning experience.
For those who are planning for or already on your journey of breastfeeding a baby with Down syndrome, here are my best tips:
Don't be afraid to ask questions with doctors or lactation consultant if you are struggling to breastfeed your baby that may have low tone.
If your child gets occupational therapy, ask the therapists if they may know any ways for you to help your child build up muscle strength around the mouth.
If for some reason, you're unable to breastfeed directly at the breast due to medical reasons, there are other ways to continue breastfeeding through pump, bottle, or g-tube.
Have that environment support system you need.
And most importantly, Don't give up. There is always a way.
