Our Story

Brent and I met in 2004 when were just two young kids. Brent brought into our marriage a wonderful son who I loved as my own. We had a rocky start but many years into our marriage God would restore and renew our marriage and so many things we once didn’t understand would all come together later on down the line.

Having a big family was never necessarily in the “plan” for us but then again we never made a specific plan, only that we knew we loved one another and wanted a family! 

But soon after having our first two kids we thought maybe two WAS enough. We teetered here and there about adding another but could never really get on the same page so we ignored it, well sometimes. That lingering feeling of wanting more kids came and went in waves for me. 

We had grown very close in our relationship with Christ and with one another after attending a marriage course through our church and God ignited a fire in Brent. One night in March of 2017 after a rehearsal dinner for some friend’s wedding, Brent approached me and said he felt God was putting it on his heart to add to our family. I’ll be honest it came as a shock at first but then something wonderful happened. We conceived our 3rd child, 

Ethan Henry Skaggs!

I always had pretty easy and healthy pregnancies and with each visit Ethan always measured right on the scale and blood-work for me came back normal. No red flags and nothing to worry about was always my doctors report.  

Somewhere between the weeks of 28 and 32, I can never seem to remember when it happened, but I was diagnosed with polyhydramnios. It basically just meant I had extra amniotic fluid. A friend of mine who was also pregnant had the same thing with two of her pregnancies and everything was great for her so I didn’t worry too much. My doctor chalked it up to say it was probably because I always have big babies. 

I remember at a doctor visit one time I asked him why exactly does he think I have it with this pregnancy but I’ve never had it before. He made the comment, “there could be many different reasons it’s happening, do you really want to know all of them?”

Looking back I should’ve questioned that remark but he was my doctor and I trusted everything he said.

Around my 37 week appointment my doctor said the baby stomach was measuring small, this didn’t make a lot of sense to me considering it was not an issue before this check up. It seemed strange to happen now that I was almost to the end of my pregnancy. My doctor seemed to think it was warning enough to induce me at 38 weeks, the following week. Nowadays it doesn’t happen very often unless there is a significant medical reason. Again another red flag that I ignored. 

I went about my week and on Thursday, November 16 Iwent into natural labor. I was almost full-term so I was not concerned in the least. I had never labored outside of a hospital so I think I was slightly in denial my body was doing this on its own. After laboring most of the day at work and at home that evening we decided to go to labor and delivery at the hospital at the advice of an on call nurse.

At around 1:30 am on November 17, 2017, Ethan was born with a fast delivery. The amniotic fluid basically was a force behind him that caused him to deliver fast with barely any pushing.

There was no sound, no cries and panic set in in my heart and the room felt, wrong. Right after they called “code blue”. He was not breathing at first and soon after some help he was still not breathing well on his own. The on all doctor made the comment when he was delivered “he looks like he’s only 28 weeks gestation.” 

I didn’t get to see him but Brent took a photo and brought it over to the bed for me to see him. I could tell something was wrong and my heart sank.

They took him back to the NICU at the hospital and soon after the doctor came in and listed off a huge list of what was underdeveloped with his body but no solid prognosis. All the things they listed should have come up on the anatomy scan when I was pregnant?? I didn’t understand, how could this be? I felt overwhelmed, sick, confused, heartbroken and so many feelings that I can’t describe into words but I just went numb. 

They called teddy bear transport for Cook Children’s downtown. Brent and I were able to see him briefly before they transferred him, at this point we had no idea what was to come next.

While waiting to be discharged from Texas Health Alliance, Ethan arrived at Cook Children’s and we began getting calls for permission to allow for additional care for our son. A picc line, intubation and poking and prodding at our precious baby and we couldn’t be there to comfort him.

It was while we were miles apart we got the diagnosis, Trisomy 18 (Edwards Syndrome) and the prognosis was terminal. 

We fell apart as we were in complete and utter shock of the news. 

I will never forget that moment. I can remember looking at Brent while he held the phone and we cried in a way we had never cried in our life. My heart ached from sadness, my body shaking uncontrollably and we literally felt as if we were too dying inside.

We finally made our way to Cook Children’s hospital where Brent, myself and our children finally got to see Ethan and hold him. We waited about a day before telling our children and families that Ethan would pass away due to this chromosome condition. Watching one by one each and everyone not understanding, falling apart and seeing our sweet 10 year old pray for God to heal him and our 5 year old son to say the words, “well I guess I won’t be a big brother anymore”. I reassured him he still would be to Ethan and to reassure our daughter that even though God may not heal him on earth and give us the miracle we hoped for that he was still good. A great friend told me one day in that hospital room, “God gives, and God takes away. Blessed be the name of the Lord.” 

Over the next 3 days we spent every waking moment in the room with Ethan and our children. Family members and friends would come and visit us and Ethan each day. We prayed fervently for a miracle, for God to give us time with our son but deep down we knew in his time he would call him home. We didn’t understand or quite trust God’s plan in that moment but we knew we just had to stay strong. Most days were a blur and we tried to carry on each day with a terrible feeling of weakness in our bodies. The feeling of sand weighing us down and unable to move. 

The neonatologist assured us that many surgeries could correct some issues and if we could get him off high flow oxygen and keep him off high flow oxygen we could begin that process. But, ultimately no matter what, our time with him would be short. (He too had a son who had a similar diagnosis)

Unfortunately, many of his vital organs were not developed and could be operated on but the underdevelopment of his brain would establish his quality and length of life.

On November 18th Ethan was able to be moved onto just a cannula for oxygen or “off the wall” and we were able to give him his first feeding from milk I had been pumping and storing for him. His big sister Destiny even fed him and we held him for much of the day. We kept thinking if we could just get him strong enough we could take him home and get as much time as God would allow us to have.

We decided on November 19th to dedicate Ethan to the Lord and while we knew that Ethan was bound for heaven, regardless, we felt that creating this memory was something we needed. 

Brent and I are forever grateful for our 3 amazing pastors who walked right beside us and in some moments felt like they carried us those days at the hospital. There was a moment of peace that day at the hospital. I told our pastor, Nathan, I have always been afraid of death. But for the first time in my life I was no longer afraid. I should have never been afraid of death but Ethan’s life was affirming it. I knew heaven would give us eternity together. No, it wasn’t the life I wanted nor had we planned to live without our beautiful son, but I know the promise of heaven was something I could be excited for now! 

It gave me something to hold on to.

We were asked many times at the hospital to make difficult decisions that Brent and I were just unprepared to make and we kept praying to God, “Please don’t make us have to chose these things”. How can a mother who just gave birth to their baby or a father who just met the little guy who’s been kicking and feeling him only beneath his wife’s belly to make such decisions. 

So many medical decisions that we weren’t prepared to take care of. But God already was preparing the way. 

God did answer our prayer. 

Ethan began to regress and all the progress he had made began to diminish. A series of things that showed us, he was too beautiful for earth. We decided to tell family not to come to the hospital on November 20th so that we could spend as much time as we needed with Ethan alone. Making a few memories and soaking up every moment God was allowing us with him. Early in the afternoon that day Ethan went to his eternal home in heaven with our precious Lord and Savior. 

Watching your baby take their first breath into this world and their last breath leaving is a feeling like none other. It can’t be explained. But a feeling I now know one too many parents have felt and because of that I ache deeply.

Our daughter who was 10 at the time and son who was 5 spent time with us and Ethan in the room after he passed. Our children said goodbye with many hugs, kisses and snuggles along side us with Ethan for many hours. We were privileged to have a photographer from now I lay me down to sleep to come and a child life specialist help us. We made foot print canvases, a mold of his precious little feet and took his last photos.

How strange it seems to do these things after you child has passed but it was ok to me. It still seems ok to have done that. We finally had photos of him without him hooked up to machines, IV’s and his picc line. He was perfect!

We got to give him his first real bath an prepare him to be left behind at the hospital. 

We left that hospital with empty arms, a broken heart, a burdened soul and a heavy weight that made me feel as if I would never be able to lift my body from a state of mourning again. I felt as if I could not lift or carry my own body again. My legs and arms left like they were weighed down with sand. So much heaviness. I remember walking down those halls, the walk into the parking garage and the drive home over a bridge before getting into I-35. I remember getting home and not wanting Brent to leave my side. Then we had to sit down and make all the dreadful calls/texts to each member of our family and close friends that Ethan had died. Deep darkness hitting over and over again as we did this.

Will I ever smile again? Will there ever be happiness in my world? How can I possibly live without my son?

We spent the next two weeks looking for a funeral home, a cemetery and planning all of the funeral arrangements for our son. 

Picking out his coffin, his flowers, songs to play and pictures to show. Brent and I never had to plan a funeral, nonetheless talk about our own before this. This process alone was enough to make you question God’s plan, but we chose not to and to push forward and to do everything possible to trust in him for. 

The day before the funeral I took a special made embroidered blanket to wrap Ethan in and held him and kissed his sweet little face one last time. It was in that moment I knew heaven was real, God is real, our soul…is real. I saw his shell I no longer saw him that day. While I still soaked my face with tears from sadness I knew that God had taken him home. That since there was ever a doubt in my mind, I no longer doubted him. While our grief had really only just begun we continued to lean on Christ as we stepped into the beginning of our new chapter.

Each day our family prayed for peace and understanding. We were grieving our son, and our children were grieving their brother who they only knew briefly. They carried their prayer bears they were given from the hospital. Over the next few months that’s when we knew bears would be apart of our healing journey. 

We decided that since the children’s prayer bears were so important for them that we would collect bears annually during Ethan’s birthday month and give back to Cook Children’s Hospital.

We have collected hundreds of bears the last 6 years and our hope is that the number of donations increase as time goes on to continue to give back to this program.

But our desire for helping other grieving parents doesn’t stop there.  

We know first hand the financial burden of funeral costs. We were blessed by family, friends and our church to be able to afford a funeral, plot and headstone. We understand that some families may not get the option to bury their child or hold a funeral service because of the cost. 

So another mission we have is to raise funds each year as a part of Hugs from Ethan to donate to families funeral costs.

We hope to partner with families in years to come to walk along side then during this process, provide resources and help show the goodness of our Savior’s love and plan for their future.

We know that losing a child comes with a lifetime of grief but we also know that God has carried us and will continue for years to come. His love and hope has provided so much comfort for our family. 

Thank you for following along and supporting our cause. As you continue to support and follow Hugs from Ethan you too will be impacting the lives of so many others.