The courageous Emily Craigie and Romana Elanor (18 months). Emily is also twenty weeks pregnant with a little boy.
Emily was able to conceive Romana just four months after she and her husband married without any complication. Everything was going very well up until their first ultrasound at 20 weeks. The radiologist came in to tell them that their baby had fluid around her lungs which could be a soft marker for Down Syndrome or another genetic issue. They said they'd look in the following week and her midwife reassured her that these things generally resolve on their own.
The following two weeks things looked stable and Emily tried to stay positive. At the 24 week ultrasound, the fluid around her lungs had gone away but Romana's heart was all the way over to her left side and she was diagnosed with congenital diaphragmatic hernia (CDH). Her diaphragm had a hole in it which allowed her intestines to pull into her chest cavity.
Emily and her husband received this news and were uncertain about how to process everything. An hour later they had their first group prenatal appointment which was difficult to go to but got them through that day. They started researching CDH and learned that their baby likely had a 50% survival rate. She soon realized that nothing was going to be as she had thought it would be. Emily flew to her home town for a baby shower her mom had planned but found it to be bittersweet with uncertainty.
When she returned home she had a lot of testing to look forward to including an MRI, echocardiogram, and meeting with their perinatologist. At that point they asked what she wanted to do and was told her that some mothers would consider terminating but it wasn't for her, she always chose that her baby would live and just couldn't imagine anything different. They received their first bit of good news when they learned that Romana's liver wasn't herniated which increased her survival rate substantially and her heart looked perfect and strong. Their perinatologist told them that he was sorry and it wasn't fair that this was happening to them which meant a lot in those moments.
From there was a lot of watching and waiting. They had frequent ultrasounds and non-stress tests as they checked in on Romana's condition. Emily had really wanted to have a water birth and see the midwives and she was able to coordinate between them and her perinatologist. CDH babies tend to be born early but Emily carried nearly to term when she was induced at 38 weeks due to high blood pressure. She had been working full time and the stress of all that was going on definitely contributed. Emily knew that her baby would be taken away from her right when she was born so she could be stabilized and ventilated because she couldn't breathe on her own.
Emily had a soft induction over three days and once they broke her water things began to move along. They monitored Romana internally and she continued to do well. Emily pushed for 4.5 hours and was able to get Romana out on her own. The perinatologist told her that if Romana didn't cry when she was born, Emily may be able to hold her while they cut the cord. They put her baby on her belly but she was barely able to touch her and couldn't see her. While she didn't have the birth experience she had hoped for, all things considered, things had gone smoothly.
She had known she wanted her husband to stay with Romana but it was odd to have just been given birth and then be alone. Emily was able to go to the NICU to see her baby soon after and while it was difficult to see her in the isolette and on the ventilator with so many wires and cords, her baby squeezed her finger immediately which helped Emily feel like her baby knew who she was. Going to the mother and baby unit without her own baby was difficult, particularly that first night when she was on her own and could hear all the other babies with their mothers.
Romana had a lot of pulmonary hypertension they needed to get under control before they could correct the hole in her diaphragm. After being there a week, Emily had learned that she could mother her baby by pumping breastmilk, changing her diaper and doing her scheduled temperature checks. On her 8th day of life, Emily was finally able to hold her baby which was so wonderful. And, on day 9 she was able to have the four hour surgery they'd been waiting for which was successful and uncomplicated.
They stayed in NICU for a total of 6 weeks and Romana continued to do very well. They began to work on feeding and growing and Emily began trying to breastfeed. It was a very stressful experience trying to nurse in NICU and being able to record what Romana was eating was near impossible. At some point, Emily realized they were never going to get out of there at that pace so decided to stop breastfeeding directly and just pump for her baby. Romana eventually weaned down to one litter of oxygen and the only thing keeping her there was feeding. Emily pushed and Romana was the first baby to ever go home from their hospital on an Ng tube.
Once home it was stressful to not have all the monitors reassuring them that Romana was okay. Feeding was an exhausting cycle - pumping, feeding, propping Romana up due to her reflex and then doing it all over again. Emily eventually decided to stop pumping so that she could have more time with her baby and she continued to thrive. They were able to remove the Ng tube and Romana continues to do very well today. Romana was always on the positive end of the CDH spectrum and other than managing her hypertension and checking in on her, she's deemed "normal" at this point.
Emily was really surprised to find out she was pregnant again in June of 2015. The entire time she felt like something awful was going to happen but she couldn't sort out if it was because something awful had already happened or she was being intuitive. They went in for their 12 week ultrasound and learned the baby didn't have a heart beat. The experience was incredibly traumatic and fed her fears that pregnancy was just going to be sad for her. Emily chose to have a D&C and found the loss of this baby to be incredibly isolating and difficult. It was so hard to know how to move on. Emily was grateful for the warmth of the nurses and doctors who took care of her and they gave her an ultrasound picture which has given her a place to visit and channel her feelings. Emily got a new tattoo to mark this baby and found it really important to do something related to her body in doing so.
While they hadn't been trying to get pregnant when this baby was conceived, after her miscarriage, Emily very much wanted to get pregnant again right away. It was something she could focus on and she's grateful they were able to conceive 3-4 months later. She's tried to calm her anxiety and remain positive. They just had their 20 week scan and the baby looks very healthy. They were able to get a good look at the diaphragm which appears perfect. Emily feels like she's stepping into uncharted waters with a more hands off pregnancy this time. She's hoping to have the birth experience she'd wanted her first- going into laboring on her own at home, going into the hospital to have her water birth and holding her baby right away.
Emily's found it healing to read other women's stories. She felt allowed to internalize her own story and know that it was a normal experience. Reading these stories gave her a community of women who had been there. She wants her daughter to know the power of her own story and her incredible strength. Romana fought hard for her place in this world and Emily wants her to honor that. Emily is on a journey of loving her own body. She's never been so mindful of what she thinks about her body and how she projects that. Seeing all the different bodies of women and reading their stories has been so healing and she is so excited to now contribute to that herself.