‘Will she survive? Will she breathe?’ This was it. There was no turning back. I heard her loud cries.’: Mom births baby with Lymphatic Malformation, condition makes her ‘love her little girl so much more’

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“‘The growth is very large and there’s a chance the baby may not survive.’ The only words engraved into my mind that morning. ‘But as long as the baby was inside me, she was fine because I was breathing for her.’ My unborn baby had a cystic hygroma; the large cysts were compressing her airways, which could have led to potentially fatal breathing problems at birth. The only way to try and get her out safely was through a C-Section in a room full of doctors, Pediatric Ear, Nose and Throat (ENT) surgeons and NICU nurses.

It was decided they would deliver Eden at 39 weeks (a week before my official due date).

The night before she came, we were up late. I was so anxious. I cried so many times that night, I was so scared of the unknown. How could I be excited when I didn’t know what was going to happen to our baby? I felt a whirlwind of emotions, I was SO excited but more fearful. Will she survive? Will she be breathing? Will I get to see her before they take her? There was so many things going through my mind it was impossible for me to go back to sleep. So, I got out of bed and got ready for one of the biggest and most important days of my life.

Taylor was too shaky to drive us to the hospital; neither of us were in the right frame of mind. So Taylor’s mother and sister took us. I was given an IV, and they put monitors on my belly to observe the baby. It was strange, sitting there just the two of us, waiting to be rolled back to the operating room. We managed a few nervous smiles and laughs. We kept talking and wishing that we’d soon be a family, and that our baby girl would be okay.

Pregnant woman stands in hospital hallway smiling with husband
Courtesy of Chelsea Jones

I wasn’t nervous at this point. I tried to switch off from what was happening, otherwise I would have gone into complete frantic mode. I don’t think it had quite hit me yet. Just before 10 a.m., the OB-GYN came in to check Eden was still breech. She asked if I had any questions. Of course, I had a million of them, but I didn’t ask one.

Right then, reality hit me. All the fear and nerves that I carried right through my pregnancy hit me all at once. Taylor tried to help me stay calm, but he was just as nervous. This was it, there was no turning back, and for a second, I wished I could have stayed in that moment forever, where I knew I could keep my baby safe breathing inside me. I had carried her for the past 9 months and soon doctors would be taking her away from me, ready to try and save her life.

There were so many doctors and nurses who had to be involved in the delivery of Eden, that they actually filled the whole corridor outside the OR. I got in and was followed by a team of nearly 20 specialists, nurses and surgeons. It was such a tiny room I began to feel claustrophobic. I tried my best to not look at how many people were actually in the room as it made the situation a million times scarier. I was rolled onto the cold operating table to begin. Was this really happening?  I didn’t feel the spinal go in, but I did feel it start to work immediately.

Then I felt really dreadful for a few minutes. I felt like I was going to throw up and pass out at the same time. The room was spinning. The doctor explained it was because my blood pressure was dropping, a LOT. Taylor felt bad that he couldn’t help and kept asking if I was okay over and over. It seemed like forever, but the dizzy, sick feeling finally passed and my blood pressure went back up. There were conversations going on between all the doctors and nurses, so it wasn’t completely quiet in the room, which I was so grateful for. By now I could feel light tugging, but there was no pain whatsoever.

Taylor kept reassuring me that everything was going fine and suddenly, so quickly (within 15 minutes of going into the OR) at 12:01 p.m. I heard the most beautiful loud cries! I can’t even tell you what I felt at this moment in time, everyone was in complete shock. Our baby was here, AND she was crying, just like some miracle. No one was expecting it and even some nurses began to cry with us. I was in complete disbelief, it all felt so surreal. I have never felt a flood of joy like I did that moment we heard our daughter cry. Something we were told was unlikely going to happen, even though I spent 9 months praying it would.

Hands hold newborn with lymphatic malformation beside head of mother who had c-section
Courtesy of Chelsea Jones

I didn’t even get to see our baby, but she was crying, she was okay. That was all that mattered. They took her over the other side of the room to clean her up, weigh her, and make sure everything was okay. Taylor went to observe everything that was happening with Eden and even cut her cord. The ENT doctors did their checks to make sure her airways were safe before they finally brought her over to me. This is when Taylor and I had a ‘moment.’ Tears of joy were streaming down our faces and he stroked my hair and asked if I was okay.

I only had a quick glimpse of Eden as they had to take her down to the Neonatal Intensive Care unit (NICU). I just wanted her to be warm and safe more than I wanted to hold her right away. I was eventually wheeled out of the OR and brought to the recovery ward. The anesthetic was starting to wear off and my pain was increasing. I was shaking with chills and sweats. I looked at all the other mothers with their babies and I felt helpless. My baby was alone with strangers and I no longer had control of anything.

‘When can I see my baby?,’ I asked the nurse who was taking my vitals. ‘Not yet.’ A kind midwife who was looking after me could see how desperate I was to meet my baby and explained that she would keep me up to date with news of how she was doing. She came back with the news that she was settling into her new, safer surroundings in the NICU. She had tubes attached to her, one to feed her and another with oxygen to help her breathe. But she was fine, she was safe. I could finally relax at this news, and I remember falling into a deep sleep.

When I woke up Taylor was gone and I got very upset. The midwife said he was given permission to meet Eden. He wanted to wait until I could go down, but he didn’t want her to be alone either. Taylor took pictures of Eden on his phone and the nurses had one printed, which he brought back for me. He told me he held her, and she looked straight into his eyes. It was amazing they got to have that bond but all I had was pictures of her – I couldn’t help but feel guilt and I cried again. I just wanted to hold my baby in my arms and kiss her sweet little face.

Father smiles as holds newborn with lymphatic malformation in NICU
Courtesy of Chelsea Jones
Baby with lymphatic malformation lays in NICU on her back
Courtesy of Chelsea Jones

Finally, it was my turn. Over six hours after giving birth I was allowed to meet my baby. I was moved from the bed into a wheelchair and was wheeled into the NICU. I was finally able to gaze at our baby through a plastic baby incubator – and although there were wires all over her beautiful new skin and into her tiny little nose, with tape securing them down. They never once stole who she was. She was beautiful even with all those tubes and wires, and I just couldn’t believe she was mine.

I stroked her head, staring into her tiny incubator and told her how much I loved her. She’s was our miracle baby, just like the NICU team reminded us repeatedly. After a traumatic pregnancy I never allowed myself to become overly optimistic, especially since I was told to prepare for the worst, so I just couldn’t believe our beautiful baby was there in front of my eyes.

They finally lifted her out of her incubator and I got to hold her. I instantly felt whole again. She completed us. I felt a love that I never knew was possible. I got to hold her for nearly an hour before I had to leave her for the night to get my rest.

Husband smiles as he leans over beside wife who holds their newborn with lymphatic malformation in NICU
Courtesy of Chelsea Jones

Eden only needed to stay in the NICU for two days before she came back onto the ward with me. Considering we expected Eden to be in intensive care for months, we were only in the hospital the same amount of time a normal C-section patient is required to.

The weeks that followed were long and slow, and at 7 weeks old Eden was admitted into Noah’s Ark Children’s Hospital, where we spent nearly a month. We did our very best to get her home. We fought medical teams and proved our worth. We learned how to care for our daughter beyond the requirements of any parent. We were medically trained. We knew more than some doctors did about her condition, about her cystic hygroma.

Baby with cystic hygroma lays in bed of Children's Hospital hooked up to monitors
Courtesy of Chelsea Jones
Baby with cystic hygroma lays in Children's Hospital hooked up to monitors as her mother rests hand on her head
Courtesy of Chelsea Jones

All we knew were hospital walls, MRI scans, and car journeys. I cried every day. We couldn’t have gotten through that time without our family visiting every day.

We loved her so much then, as we do now. So much has changed. She came home, and it was a miracle. She defied odds. She proved people wrong. She got rid of tubes and wires like they were nothing at all. We never expected it, but she DID IT.

Baby with cystic hygroma sits on floor of home looking up with white bow on her head
Courtesy of Chelsea Jones

‘Eden, you were not what we expected, you were better. I may not have had the easiest of pregnancies. And we may have spent long weeks in the hospital. And we may have been scared and worried about what was going to happen to you. But wow we loved you. We still love you. We were and are still proud of the miracle you are. You were perfect, and you continue to be more than we could ever wish from you. We got to bring you home. You sleep next to us every night. We kiss you every day. Hold and comfort you. Make you smile. And your birth will always be magical, despite your journey to get there. Thank you for always fighting this illness, and thank you for letting us be the ones who holds your hand. Raise you. Love you.’

Husband and wife sit on white carpet beside baby daughter with cystic hygroma for photoshoot
Tanya Thomas Photography

When we found out Eden had a lymphatic malformation, we were once scared. We searched the Internet looking for any answers. We asked questions, we researched, and we did our part in understanding this ‘thing.’ This cystic hygroma. But what we didn’t find was much hope – so I am here to give a first-hand account of what it’s like having a child with a lymphatic malformation, and why not to always blindly follow advice from doctors.

In the middle of a rare diagnosis, we were once afraid. We were told Eden wouldn’t be normal. We were told she would be malformed. We were told there was a chance she wouldn’t survive. Even after she was born, things weren’t perfect. Doctors were concerned about its size putting pressure on her airways. We were told surgery would be a normal course of life for years to come… But here we are, 2 years on, countless hospital visits and nine treatments later, with our perfect happy little girl.

Little girl with cystic hygroma sits smiling at wooden picnic table
Courtesy of Chelsea Jones

Eden is now 2 years old and has even become a big sister to a little baby brother. So far, Eden has had a total of 8 sclerotherapy treatments and a laser and cyst removal on her tongue to help reduce the size of the mass in both her neck and tongue.

Little girl with cystic hygroma stands smiling holding bucket in berry field
Courtesy of Chelsea Jones

Eden is due to have a tongue reduction in January of next year and will eventually, Eden will undergo serious, surgical removal for the remainder of the malformation.

Little girl with cystic hygroma stands on door mat with tongue out
Courtesy of Chelsea Jones

I don’t know how it is possible, but all of this has just made me love this little girl so much more. She is such a fighter and my heart grows bigger with love for her every single day.

People may think we’re a bit casual about Eden’s illness. We are most definitely not. But since Eden came along, I would rather choose my battles and put my emotions into the things I can do for her. Like being there for her, and bringing her up to be a good person. We won’t let Eden’s illness define her and although we can’t do anything about her having it, we want to give her the best chance of beating it (physically and emotionally).

Husband and wife stand holding newborn beside first born with cystic hygroma
Tanya Thomas Photography

We still have a long journey ahead of us and no one knows yet what challenges we may face along the way. We have had to learn to do things we should never have to do as parents and we have built up courage that we didn’t know we had, just to take care of our daughter. But we have come so far.

If I have learned one thing as a mother, it is that motherhood is a journey filled with ups and downs. Just when I think I have it all figured out, the game changes, but even still, I never give up on hope. Above all, rather than trying to be the perfect mother, I try to be the best mother, by always giving my best.”

Little girl with cystic hygroma smiles in chair in home wearing light pink dress
Sweet Pea Photography

This story was submitted to Love What Matters by Eden’s mom, Chelsea Jones. You can follow Eden’s journey on Instagram. Submit your own story here, and subscribe to our best stories in our free newsletter here.

Read more inspiring stories about children with beautiful differences:

‘I heard 3 things when he was finally out: ‘He’s here, he’s breathing, and he has a TON of hair!’ What a joyful moment. I say moment – because the joy only lasted that long.’

‘My honest thought when I first saw her was, ‘It wasn’t supposed to be this bad.’ The nurses were silent. Emmy was silent. It was eerie and terrifying.’
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