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When you see the photos of Rory and his mom, Timna, from our breastfeeding photo shoot you can’t help but notice how much fun they are both having. They clearly delight in their relationship with each other and the happiness is palpable. You would never imagine that these two had a very difficult start.

Rory was born right on time, a much-anticipated younger brother. His family was surprised to find out that the doctors believed that he might have Down syndrome (DS). Timna had decided against prenatal testing for personal reasons. She understood that DS was a possibility but she never thought it would happen to her. Thankfully Rory did not have any heart issues and did not need to be admitted to the Neonatal Intensive Care Unit (NICU). He was able to try to latch and nurse right after he was born. He had some early breastfeeding success but then he became sleepy and started having problems keeping his oxygen saturation and heart rate up. He was moved quickly from his mother’s bedside to the Special Care Unit (SCU). Timna, who had successfully breastfed her older son, found it very challenging to try to nurse Rory amidst the confines of the SCU. She was not able to try a side-lying position, which is often very helpful for children with Down syndrome. She also found trying to initiate a breastfeeding relationship while managing the oxygen, wires, and monitors that he was attached to very difficult.

                  Rory was in the SCU for 12 days. During that time Timna pumped and gave him expressed breast milk with a bottle, knowing that initiating and protecting her milk supply was the only path toward a successful breastfeeding relationship. She felt pressure for Rory to consume enough calories so that he would get bigger and stronger, which the doctors told her was the only way that he would manage to keep his oxygen saturation up and go home. All babies have a “car seat” test before they are cleared to leave the SCU. This is a test where the baby is placed in a car seat for approximately one hour while they are monitored. In order to pass this test their oxygen saturation above a certain percentage. Rory did not pass but his family took him home in a car bed, which he had to use every time he was in the car, for several weeks. 

When Timna and Rory got home they continued to have several breastfeeding challenges. Rory would have a difficult time latching and even if he did latch he would fall asleep while nursing or would be too tired to nurse after a few minutes. Ten minutes later he would be hungry again so Timna had to supplement with bottles of breast milk. At around four weeks old Rory seemed to start really hate to nurse. He would scream and cry every time she tried to put him to the breast, and he often refused to latch. She thinks that he realized that the bottle was easier and began to prefer it. She began giving him a few ounces of milk by bottle, to take away the edge of being so hungry, and then would nurse afterward when he was more able to focus. As with many babies with Down syndrome, Rory had a difficult time nursing and breathing and so, in the beginning especially, Timna had to be very careful with positioning him in such a way that it was easy for him to be able to do both.  They also used a breast shield to help make latching and staying latched, easier.

                  Timna pumped 5 or 6 times a day to provide enough breast milk for Rory. At first, she attempted to nurse him at every feeding session but eventually pumping, feeding, and nursing became too much and she would just give him a bottle of breast milk. Sometimes she would go a whole day without attempting to nurse Rory and she was becoming more and more discouraged that they were losing their opportunity to develop a nursing relationship. She had a lactation consultant come to the house, which she found extremely helpful and supportive. The lactation consultant was very encouraging but mentioned to Timna that perhaps the pumping, bottle feeding, breastfeeding routine was having an effect on her mental health. Timna knew that she could stop pumping, and sometimes wanted to, but describes feeling a determination to make it work, despite wanting to throw her pump out of a window! Her lactation consultant gave her several good tips, including not spending too much time trying to position and latch. She suggested that Timna try to approach breastfeeding Rory very casually, allowing him to initiate. This can be extremely difficult for mothers who are so invested in trying to make their breastfeeding relationship work but Timna reports that’s ultimately what happened with her and Rory. One day, when he was about three months old, “We were in bed, and I put him next to me and was very calm about it. He didn’t completely crawl over and do it on his own, but he just had his head there and he was the one who was initiating and turned his head to do it and it finally worked really well.” She let him nurse without the nipple shield and realized that his mouth had developed in such a way that he was strong enough to nurse without it. Within a few days, they had left not only the nipple shield but also the pumping and bottles completely behind!  

When you’ve established a breastfeeding relationship with your child, it’s easy to look back and think that it was inevitable but, for many, there are dark and depressing moments, where giving up seems like the only reasonable option. Timna says, “definitely a few weeks into being at home and trying to nurse Rory and exclusively pumping, things went from ok, to worse and worse. The nursing sessions got more and more challenging. I had plenty of moments where I thought we were never going to get there, and I‘m just going to have to exclusively pump indefinitely, and it’s exhausting. I had my days when I started to lose hope, and I didn’t think we were ever going to get there, and this was our reality.” She was worried about what she would do when she had to go back to work. She knew that she could not exclusively pump and work, it just was not manageable for her. To help keep her sanity she set a goal. If Rory was not able to breastfeeding by five months old, she would stop trying. She reports feeling surprised and relieved when he was finally able to nurse. “I didn’t know he had it in him,” she says. When asked what guidance she has for other mothers she suggests having a supportive lactation consultant come to their home and says, “I think I was under the impression there was some kind of window, for all babies. Like, if they haven’t figured out nursing between 6 or 8 weeks, they probably won’t ever figure it out, and I guess that’s not true. I wish someone had told me it was possible that he could learn to breastfeed much later. It might have taken some of the pressure off.”        

Even though Timna’s journey to breastfeeding Rory was extremely difficult for her and she often wanted to stop pumping she continued because she really wanted to have a breastfeeding relationship with Rory, as she had had with her older son. She talks about the hours she spent, frustratingly trying to get her little nursling to breastfeed properly. She admits that sometimes they both ended up in tears. But the joy and relief she felt when they finally nursed well together was such a blessing, it solidified their bond and brought them even closer together. Rory became such a huge fan of nursing, by 4 months old you would never have known he had struggled in the beginning. In retrospect, after having nursed Rory until he was 22 months old she says that all of the difficulties were worth it.

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