three of hearts

THREE OF HEARTS

Meet Cate, Harper, and Mighty Mae our "Three of Hearts." These little girls were all born within three days of each other and were all at Boston Children's Hospital for open heart surgery at the same time! When they met for the first time at our photo shoot to encourage breastfeeding among mothers of babies with Down syndrome we were surprised to hear that they were in the same hospital at the same time having the same surgery but they never met each other. When their families told us what they'd endured and how relieved they were to celebrate their 1st birthdays a few days later, we knew we had to celebrate big! A triple cake smash, the set laden with hearts, was photographer Nicole Starr's idea. The girls are showing off their scars to let everyone know what a heart warrior looks like. 

As many as 50% of babies with Down syndrome are born with congenital heart defects. Not all of those defects will need to be repaired but a large percentage of them need surgical intervention and they are always harrowing for the parents. Unfortunately, not all babies who have this surgery make it to their first birthdays and for those that do, their parents breathe a huge sigh of relief and often plan a big party to celebrate! These girls were no different and we are happy to say they are healthy and thriving today!  

READ MORE ABOUT THEIR STORIES:
Aimee & Cate
Michele & Harper
Cristina & Mae

"THREE OF HEARTS" IN THE MEDIA:

BREASTFEEDING SUPERSTARS: CRISTINA & MAE

Photo courtesy of  Nicole Starr Photography

Photo courtesy of Nicole Starr Photography

The first thing you notice about this week’s breastfeeding Superstar is her thick auburn hair that calls to mind a movie star from the 40s. Meet Mighty Mae and her mom, Cristina. Mae’s easy smile lights up her face and makes everyone’s day a little brighter. You would never imagine what she has battled, and won, to get to where she is today.

Mae was born full term and was a hearty 9 pounds. She spent the first 5 weeks of her life in the neonatal intensive care unit at Saint Elizabeth’s Medical Center and then an additional 5 weeks at Boston Children’s Hospital. She was born with several congenital heart issues, including atrial and ventricle septal defects and a Patent Ductus Arteriosus. She had her VSD/ASD/PDA repair at six weeks old but the surgery was complicated by a complete heart block. A heart block is a condition where the electrical impulses that normally instruct a heart to beat are either partially or totally blocked and so the heart beats too slowly. This can be a life-threatening condition and required another surgery to implant a permanent pacemaker. The device is the same size for adults and babies so, due to limited space near a baby’s heart, the implement is actually in Mae’s belly. It’s a palpable and very concrete reminder of all she has been through. Mae also struggled with pulmonary hypertension, which is high blood pressure in the lungs and can lead to right-sided heart failure. At seven months she had a third heart surgery to repair her mitral and tricuspid valves.

After Mae’s initial 10-week hospitalization she was in and out of the hospital several more times and spent a total of 134 days as an inpatient in the first year of her life. Throughout it all Cristina provided Mae her milk, at first directly at the breast, then through a supplemental nursing system (SNS), and then fortified with formula through a nasogastric (NG) tube. Like many babies with Down syndrome, Mae latched and nursed well right away after birth, actually managing breastfeeding more easily than taking breast milk from a bottle, but she struggled to have enough energy to gain the weight that she needed prior to her first surgery. The NG tube allowed Mae to receive the nutrients she needed without expending the effort that would have been required to nurse or bottle feed.

After Mae’s first heart surgery, at six weeks, she struggled to re-learn how to breastfeed. Her mother worked with lactation consultants in the hospital and outside of the hospital to help Mae relearn the skills she needed to nurse successfully. Mae did better with nursing than with a bottle so Cristina persisted. She describes a particularly emotional weekend where Mae’s medical team approved a trial of breastfeeding only, to see how she would do. It was over Labor Day weekend and Cristina describes it as “an absolute labor of love”. She nursed Mae every 3 hours, around the clock for 3 days. She used something called a supplemental nursing system (SNS), which is essentially a flexible tube taped to your breast with the other end in a small bottle of milk. The idea is that the baby does not have to work as hard to get the milk and it creates a positive feedback loop that encourages them to keep going. Eventually, as they get stronger, they wean off of the SNS and they are just direct nursing. Cristina would pump before she nursed in order to induce let down and she would get rid of her foremilk, leaving the calorie-dense hindmilk for Mae. Unfortunately, after 3 days, she had to admit that Mae was not ready to get all of her calories from direct nursing as she was not able to sustain her weight. The medical team reinserted her NG tube. This was difficult for Cristina to admit but she knew that she had to do what was best for Mae and she believed that Mae would eventually be strong enough. Unlike Aimee and Cate, our previous breastfeeding superstars, Cristina does not have an ah-ha! moment when Mae was suddenly able to nurse. Her journey to nursing exclusively was more subtle. After Mae returned home from the hospital she was breastfeeding and then Cristina would supplement her efforts with fortified breast milk through her NG tube. Gradually, over time, Mae needed less and less supplementation until they were finally able to remove the NG tube and Mae could nurse exclusively.    

Cristina nursed her older daughter for a full year and was committed to doing no less than that for Mae. She had the help of several lactation consultants at Boston Children’s Hospital. She also went to a “mommy and me” breastfeeding support group that she had attended when she was breastfeeding her older daughter. This level of continuous support and encouragement helped her feel that she and Mae would eventually be successful. She thinks it is equally as important for any child to breastfeed and sights the bonding time and the antibodies Mae received through her milk as her two most motivating factors. She is proud to have overcome the hurdles that she and Mae faced to develop their breastfeeding relationship and believe that it was worth it for her to persist. Cristina encourages new moms to try breastfeeding their babies with Down syndrome. “It is possible!” she says, “It might require a bit of extra effort, but sometimes breastfeeding does for any child. Don’t give up; seek support if you need it. It is so worth it in the end.”

READ ABOUT OUR OTHER BREASTFEEDING SUPERSTARS:
Aimee & Cate
Michele & Harper
 

BREASTFEEDING SUPERSTARS: Michele & Harper

Michele & Harper   Photo credit to  Nicole Starr Photography . 

Michele & Harper

Photo credit to Nicole Starr Photography

This is the second in an ongoing series of breastfeeding superstars featured in our photo and video to promote breastfeeding among children with Down syndrome. 

The first thing you notice when meeting this week’s breastfeeding superstar is how delightfully expressive she is. Looking through the photos from our shoot you can tell exactly what she’s thinking and she had us all laughing with her transparency! Meet Harper, and her mom, Michele, the second in our breastfeeding superstars series.

Harper was born three weeks early with Down syndrome, a complete AV canal defect, and transient myeloproliferative disorder (TMD), which is a condition found only in newborns with Down syndrome. TMD is a form of leukemia that usually spontaneously resolves but requires treatment in about 20% of cases. It can be fatal if intervention is not successful. Harper has been monitored monthly since birth to ensure that her TMD has not transitioned into leukemia and we celebrate because last week we found out that she now only has to have her blood checked twice a year!

                  Harper, who turned one in June, is the middle child in our “three of hearts” series, and was in the hospital for the first 10 weeks of her life. Even though Harper had a latched well from day one she had difficulty sustaining her breastfeeding sessions because of her weak heart. The doctors were concerned that she was not getting enough volume and calories so they suggested she switch to fortified breast milk. She was eventually diagnosed with failure to thrive because she was unable to gain the weight required to keep her healthy and even the act of suckling from a bottle was too taxing. Due to her lack of weight gain, her worsening heart failure, and her need to rapidly get strong enough for her heart repair surgery, Harper’s medical team placed a nasogastric (NG) feeding tube. Throughout her time in the hospital Michele continued to put Harper to the breast but also pumped milk that the nurses could feed to Harper through her NG tube.

Even though Michele’s obstetrician warned her that she should accept the fact that Harper she would need special feedings, bottles, and possibly tube feeds, Michele was determined to breastfeed her anyway. In one respect, Michele’s OB was correct, Harper did need all of those things in the beginning of her life but that’s not where the story ended. Due to Michele’s experience nursing her other children, the support of the nurses on the pediatric floor, and her dedication, Harper was eventually able to directly nurse at the breast and is a champion nurser a year later.

Michele relays the story of being told by her genetics counselor that her baby would likely never eat or drink like a “normal child”. Understandably, Michele cried for hours and left his office with a deep fear that she would not be able to nurse Harper. She struggled with her baby’s diagnoses of Down syndrome in the beginning and felt like a failure for not being able to have a healthy child. She was terribly afraid of losing Harper to her heart issues or to her TMD and she found it very difficult to bond with her baby at first. Thankfully, despite her worry and her negative early experiences with her medical professionals she remained committed to breastfeeding and found allies in Harper’s. They encouraged her by telling her that the babies with Down syndrome were often some of the best babies that they’d had in terms of breastfeeding. She says the nurses encouraged her and helped her feel as though providing her milk was critical to ensuring Harper the best start in life. As she nursed Harper she got into the familiar pattern of providing nourishment for her baby and started to bond with her like she did with her other children.

Michele and Harper left the hospital soon after her heart repair and Michele continued to pump and feed her through her feeding tube while bringing her to the breast to help her continue to develop those skills. Harper had her NG tube removed in mid-September and she has been strictly on oral feeds since then and nurses at the breast just like Michele’s other children did.

Michele admits that their road was a bit difficult and complicated but says that, for her, seeing Harper nurse successfully after trying for so long has given her the confidence that her baby can do anything she sets her mind to. She has this advice for moms who would like to breastfeed their babies but are afraid that they won’t be able to do it, “Do it! Get help if you need it, talk to other moms who have had positive experiences.”

 

READ ABOUT OUR OTHER BREASTFEEDING SUPERSTARS:
Aimee & Cate
Michele & Harper
Cristina & Mae

 

THREE OF HEARTS

Meet Catherine, Harper, and Mae, our "three of hearts". 

Meet Catherine, Harper, and Mae, our "three of hearts". 

We are so excited to share our "three of hearts" with you in a few weeks! These three heart warriors were all born within a day of each other, all have significant congenital heart defects, and have all gone on to be champion nursers. It gets better though, they all had their heart surgeries at the same hospital and they were all inpatient at the same time. They never knew of each other until Julia's Way brought them together for our spectacular photo shoot, that has gone on to inspire breastfeeding moms everywhere.

We have a cake smash scheduled for them in about ten days and we can't wait to see the photos. These girls are not only advocates for Down syndrome, not only for breastfeeding but they're advocates for congenital heart disease (CHD) as well. We are highlighting their journeys on our blog and through this photo shoot in order to bring awareness not only to CHD but to reinitiating breastfeeding after heart surgery. We are amazed by how much they've overcome in their short lives and we can't wait to celebrate them. Stay tuned for the photos.

Read their individual stories here:
Aimee & Catherine
Michele & Harper
Cristina & Mae

Breastfeeding superstars: Aimee & Catherine

Photo credit:   Nicole Starr Photography

Special thanks to Sruthi Muralidharan from "No BS about DS" for co-authoring this profile. 

Catherine and her mom, Aimee, are superstars in the world of breastfeeding if you ask me. Catherine, who turned a year old in June, was born with Down syndrome, duodenal atresia, a blocked common bile duct and several heart complications including a complete AV canal defect with tetralogy of Fallot. She required multiple surgeries soon after birth to remedy these issues and spent the first eighty days of her life in the hospital.

Catherine’s first surgery, the repair of her duodenal atresia, happened when she was just four days old. Duodenal atresia is a malformation of the small bowel that makes it impossible for the stomach contents to pass into the rest of the GI tract. It is a relatively simple repair but the condition can be life-threatening if it is not done soon after birth. While Catherine was healing from her duodenal atresia repair she had to receive all feedings through a nasogastric (NG) tube (a small tube is threaded in one nostril, down to the stomach). She kept the NG tube in for more than 4 months.

From the time Catherine was born Aimee worked with the lactation consultants at Boston Children’s hospital to pump and develop her milk supply.  Catherine was given this milk, fortified with formula to increase the calories, through her NG tube, which allowed her to receive many of the benefits of breast milk, including the protective antibodies and the custom-designed nutrition while ensuring that she was receiving enough calories to thrive.

Catherine’s congenital heart disease required that her heart and lungs work overtime to meet the demands of her basic metabolic processes and so she didn’t have any reserve left over to nurse. Additionally, Catherine’s low tone, caused by her Down syndrome, meant she had a weak suck and put her at risk for aspiration. Despite all the health challenges, Aimee was determined to breastfeed Catherine. Aimee says, “From the moment I found out that Catherine would have Down syndrome my only thought was that we will be fine if she could breastfeed”. Having a newborn in such a medicalized environment and not being able to take her home and just enjoy her seemed incredibly abnormal to Aimee and she felt that being able to nurse would bring normalcy to their situation. She was lucky to have had the experience of nursing her older child and was committed to nursing Catherine, too. With the encouragement of lactation consultants at Boston Children’s Hospital Aimee began to pump to establish her milk supply. Meanwhile, they continued trying to get Catherine to latch properly, working with her frequently with the ultimate goal of having her directly nurse at the breast.  After her heart repair, Catherine gradually began to have longer periods of wakefulness and her suck became stronger and more coordinated.

At about four months old Catherine and Aimee were at home and Catherine pulled out her NG tube and Aimee thought this is it; we have to make this work. Aimee felt like Catherine needed to take this opportunity to figure out how to directly nurse at the breast because she knew she couldn’t keep pumping.  Children who have a history of an NG tube from birth sometimes have oral aversions and have a difficult time taking anything by mouth. However, Aimee put Catherine to breast and she nursed like she had been doing it for her whole life. “It was like all the stars aligned for her…and for me…I felt … we can really do this.”

Despite significant medical challenges, several surgeries, and weeks in the hospital Aimee and Catherine persevered. Aimee’s desire to have Catherine nurse at the breast was always in the forefront of her mind. Even though pumping can be difficult she feels that the reward was worth it. Now that Catherine is nursing directly at the breast the relationship is even sweeter since she knows how hard she and Catherine both worked to get to where they are now. When asked what advice Aimee would give mothers out there who want to breastfeed their babies with Down syndrome she says “I just want to tell you: don’t give up. You can do it and you can do it together.” 

Photo: Courtesy of Nicole Starr Photography.

READ ABOUT OUR OTHER BREASTFEEDING SUPERSTARS:
Michele & Harper
Cristina & Mae