Introduction
To close out Pregnancy and Infant Loss Awareness Month, I sat down with Tasha Ruholl. Tasha was kind enough to openly share more about the losses and subsequent grief that she and her husband have endured. She speaks about how it was her grief that drove her to make a difference and help so many other families. Tasha wanted to give the gift of time to any other parents who have to endure the unimaginable path of losing a child and they were able to achieve this by donating 10 CuddleCots to local hospitals. Additionally, she continues to honor their son, Daniel and their other 2 losses by working on the White Lily Project. Along with 3 other mothers who have endured loss, they are raising money to fund an Angel of Hope Statue. The Statue of Hope and healing garden will offer parents and family members who have experienced a pregnancy loss or the loss of an infant or child, a place to honor their loved one and find a sense of community with others who have experienced a similar tragedy.
You will not want to miss this episode as we discuss loss and grief, and how beauty and light can be restored within you after enduring a completely unexpected tragedy.
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Episode 54
Our Guest
Tasha Ruholl, M.S. CCC-SLP
Tasha Ruholl has been happily married to her husband for nearly 10 years. She and her husband have four beautiful boys and live in Central Illinois where they were both born and raised. She is an Early Intervention speech-language pathologist, providing speech/language and feeding therapy to children ages birth to three years. Tasha previously worked in the NICU setting which is where she found her passion for feeding therapy. She enjoys spending quality time with her family.
Tasha’s pregnancies and children
Tasha feels very thankful for her professional NICU experience because not only did it allow her to find her passion for feeding therapy, but also because at the time she worked in the NICU as a speech pathologist, their first son was rushed to that same NICU immediately after his birth. She felt that it was so helpful to know the providers, the nursing staff and being familiar with the NICU environment. Their son’s NICU admission was the result of a congenital birth defect requiring him to be airlifted to another hospital in order for an airway and esophageal reconstruction surgery to be completed.
Over a year later, they became pregnant with their second son in 2017. Unfortunately, at nearly 31 weeks’ gestation, their hearts were shattered and their world was forever changed. Their son, Daniel Anthony, was born to them sleeping. They spent three excruciating, yet very memorable days with their son. She said the grief and hardships after his passing represent the toughest time in their lives. However, in working through their grief and trauma, they leaned into their faith in hopes of one day holding another precious miracle in their arms.
Subsequently, they had a loss at 10 weeks’ gestation which they later learned was caused by a chromosomal abnormality. They went on to have a healthy baby boy in 2019 followed by the loss of their baby girl at 15 weeks’ gestation in 2020. Their youngest son was born healthy in 2021.
They have had 6 pregnancies. Tasha admits that losing a baby in every trimester has been a hard thing to come to terms with. So they have had to learn, grow, and figure out how to navigate life from it. She said that it is not something she would have ever thought would be part of their story. But, their grief led them down paths that have helped them grow and heal. Additionally, they have had the opportunity to support other families going down the unimaginable path of losing a child. Through their CuddleCot donations and White Lily non-profit organization, they have worked to help those on both sides of loss—during and after.
Drasen’s time in the NICU
Their first son Drasen was born in 2015. He was rushed to the NICU due to a congenital birth defect, Tracheoesophageal fistula and esophageal atresia. Tracheoesophageal fistula (TF) consists of an abnormal connection between the esophagus and trachea (airway). Esophageal atresia (EA) occurs when an infant’s esophagus is not attached to their stomach. The upper part of the esophagus connects the mouth/throat to a blind pouch (proximal end), and the lower part connects the stomach to a blind pouch (distal end). With Drasen, all of his secretions were pooling which caused him to choke on his saliva. Once he was airlifted to another hospital, he had an emergent esophageal reconstruction surgery.
Tasha said his time in the NICU was very difficult time for them. She reflected on the time that he coded and truly understands the fear, anguish, and worry that NICU parents endure because it was so difficult on them. Drasent spent two weeks in the NICU. He did well in the NICU overall, but his condition has led to other issues down the road. He had respiratory conditions for several years and had an additional reconstructive airway surgery a year and a half ago. But, she proudly said, that you would never know what he’s been through by looking at him. He is the most active little guy.
But, as you start having kids, she said, you see rainbows and sunshine and assume that it will all go well. As you dream of becoming a parent, you have all these plans and when things do not follow that path, and things go terribly wrong, it is so difficult to process and navigate through it.
The loss of Daniel
Tasha’s pregnancy with Daniel was considered high risk due to Drasen’s congenital TF and EA. But, despite it being more high risk, there was still no preparation for what was was going to happen. It was considered a healthy pregnancy, without complications. Tasha said that dealing with the loss of a child has to be one of the most excruciating losses that any human can go through. It has been six years now and she can now admit that she is in a much better place.
After about a year after Daniel was born sleeping, they learned that the likely cause of Daniel’s stillbirth was due to a velamentous cord insertion. A velamentous cord insertion is an umbilical cord without the protection of Wharton’s jelly. Without the protection around the cord, the blood vessels in the umbilical cord are more likely to break, bleed, and become depressed. Identifying the likely cause has given Tasha and her husband some closure.
The additional losses they endured
The loss they experienced at 10 weeks’ gestation was due to a trisomy disorder which is a common cause of first trimester pregnancy losses. They also lost a baby girl at 15 weeks’ gestation. With that pregnancy, Tasha said everything was going great without any issues. Despite every genetic test, they never found a cause to explain her passing. Tasha did have COVID two weeks before she passed, but unfortunately, they never found anything conclusive.
Finding some peace
It is very common for families who have endured a loss to want answers regarding why it occurred. And with the unknown, as a Mom, although you try really hard to not blame yourself, you do carry some guilt with you for years. It does take time to process everything, but I asked Tasha if she felt some peace in finding answers for two of their losses
Tasha said that especially for their son Daniel that was stillborn it absolutely helped them. They went for a full year without having any answers. Due to her inability to find closure and wondering what she did wrong, Tasha began to do her own research. After seeing a new specialist, they found the answers in the placenta and umbilical cord’s medical and pathology report. Despite the relief they felt with the answers, the year of “not knowing” they endured was very hard to navigate.
Moving forward after each loss
Tasha said that after they lost Daniel, although she knows that it sounds odd, all she could think about was being pregnant again because that was how she remembered him. Since she had no closure and thought that she would be bringing him home, the devastation was just really unbearable. Since she had to have a cesarean section, they could not try for another baby for at least a year and that whole year was really tough on them.
But, she spent some time trying to do a lot of healing, both physically and mentally. To support her emotional well-being, she sought out a counselor. She wants to encourage others to continue looking until you find the right counselor for you. Tasha acknowledges that the initial counselor she found was not a good fit, but she did end up finding someone that was really fantastic who allowed her to talk and work through her grief and trauma. She appreciated having insight from a professional and someone outside of her husband and friends to be that open ear.
Tasha admits that going into a pregnancy after any loss is hard. And despite all of the preparation, you will never truly be prepared. As she would look at the span of nine months, it would seem very daunting, overwhelming, and terrifying. But she tried to focus on one day at a time, one sonogram at a time, or one week at a time.
Tasha had an unexpected “miracle moment” that helped her get through the remainder of her pregnancy that followed Daniel’s passing. As she was approaching the gestation in her pregnancy around the same time of Daniel’s passing, she unexpectedly heard from a former sitter of theirs that she hadn’t spoken to in years that lived over an hour away. She reached out to Tasha to let her know that she had a dream about her. Tasha said that she was very caught off guard. But, she proceeded to tell her that she had dreamt that they had a beautiful baby boy who they named Andrew, but called him “Drew” for short to keep in line with all the “D” names in their family. Tasha said that she and her husband had just chosen their son’s name the week before. They couldn’t believe it especially since they had not discussed it with anyone!
Tasha said it was the God moments that ultimately got her through! She acknowledges that everyone does not get those kind of those kind of miracle moments, but staying in her faith in God definitely helped. She also tried to stay positive and keep an open line of communication with her husband so they could try to work through it together.
As it is very common for couples or significant others to process the grief differently and with varied time frames, it is essential to keep an open line of communication. Couples need to openly discuss their feelings, emotions, and struggles with one another when they endure a traumatic experience and especially a loss.
The motivation to give back
For Tasha, it was her grief that motivated her to give back. She said that if there was a way for her to keep other families from experiencing the same situation that she and her husband did, then she really wanted to pursue it. She found that in the CuddleCots. Once she learned about them, she felt like every hospital needed to have one.
When Daniel was born still, their hospital did not have a CuddleCot. So unfortunately, they were encouraged by the nurses to use the morgue, which is an absolutely awful thing for any parent to endure. Tasha said that the nurses encouraged the use of the morgue with their best interest in mind because they were trying to preserve their son while they spent time with him. But, what that meant for Tasha and her husband is that they had to request for Daniel to be taken away from them and to be taken to “that place.” Tasha somberly said that it was even more devastating to have their son’s name and that word together in the same sentence.
With that, Daniel would be gone for several hours at a time and then returned to them. And he was obviously very different. So, they not only lost a lot of time with him, but they lost the ability to be able to see him for what he was during the time. Tasha explained that time was just not kind to his figure, especially when they are so fragile.
So they spent about three days with Daniel and by the time they left, she knew that it was his way of telling them that they needed to say goodbye because it was becoming even more difficult.
A CuddleCot, is a cooling device that allows parents to never have to put their baby down if they don’t want to. There is a cooling pad that can either be placed in the bassinet or it can be held on the baby. It allows the parents to be able to hold the baby or have family come visit with them in the room. The cooling pad with remain with their baby whether he/she is in their arms or in the actual cot. With the baby being cooled continuously, it helps to preserve the baby’s features for much longer. Giving parents who go through the unimaginable path of losing a child the gift of time and preventing them from ever having to use something like the morgue was their inspiration.
Tasha and Dustin did one single fundraiser a year after Daniel had passed and they raised $30,000. Their community came out and really rallied for them! They had a goal of raising enough money for one CuddleCot and they ended up raising enough money for 10! They picked out 10 hospitals including the one that they had Daniel at along with 9 other locations in the central Illinois area.
At each hospital, they would share their story so the hospitals understood what their reason was for their donation. Tasha said it was truly amazing to see the hospital’s responses. She received some letters from nurses sharing some touching stories. At one hospital a family was able to benefit from the CuddleCot that they had just delivered that exact day. At another hospital, the nurses in the ICU borrowed the CuddleCot after a pregnant mother had been in a terrible car accident. Sadly, she lost the baby, but they kept the baby in the CuddleCot until the mom woke up and could see the baby. The stories that nurses and families have shared with her have really touched her.
Sadly, our experience was similar when we lost our son, Weston. The hospital did not have CuddleCots so he was placed in a little box. I remember him being in there with me. I would wake up during the night and talk to him, sing to him and I even read him one of William’s books that I knew by heart. The next morning, when I went for my D & C, Josh kindly said that he thought it was time to let him go. Because sadly, time was not kind to his beautiful features as well. It was so incredibly hard to tell him goodbye.
It is so amazing how Tasha and her husband are impacting so many families so that their experience will be different. The CuddleCots also allow photographers to capture beautiful keepsake images for the family as well.
The White Lily Project
Tasha is also a member of a nonprofit organization called The White Lily Project. She and 3 other mothers are raising money to fund a local Angel of Hope statue and memorial garden. The Angel of Hope Statue is an international symbol of hope for parents that have lost children. It originated from The Christmas Box book by Richard Paul Evans. At the annual ceremony on December 6th at 7 pm, everyone is encouraged to bring a white lily or white flower and set it at the foot of the statue. They also plan to have granite walls around the statue with names of those lost during a pregnancy, or for any infant or child loss up to 18 years of age. Each year, they will commemorate the names on all the walls. Anyone can add their child’s name whether they are local or live elsewhere.
They raised over $120,000 for the project within a year and hope to break ground in the spring. For anyone interested in adding their child’s name(s), they are currently working on their website, but will post updates on their Facebook page when it is ready.
Pregnancy and Infant Loss Awareness
During Pregnancy and Infant Loss Awareness Month, many parents openly speak out about their personal losses. Sadly, with 1 in 4 pregnancies ending in loss, the awareness also makes everyone very aware of how common it is. But, there are also many couples who choose to keep their loss more private. However families approach their loss is a very personal choice without a right or wrong answer.
It is also often a struggle for families who have endured a loss, to explain how many children they have and whether or not they should include their heavenly children. Oftentimes, the decision to only mention your earthside children tends to stem from fear of making the other individual uncomfortable.
Tasha introduced her family so eloquently, but even she said that it has been challenging for her since they have experienced loss at every trimester which has left her confused in how to present their children. But ultimately, she said, it should be what you are comfortable with. As a parent, you know in your heart where your children are so you should do what makes the most sense for you and what speaks true in your heart.
Supportive words for anyone enduring a loss
Tasha admits that it is difficult to give general advice as everyone is likely in many different stages of grief. But, her priest shared something with her one day that stands out in her mind. He said that grief is a place to visit not to stay. She admits that initially in the days or months after Daniel had passed, that it was a really hard concept for her to wrap her head around. But, she also knew that it was important for her in the early days to be very cognizant to try and work at being present for their son Drasen who was two at the time. Because, she said, when you are going through the deepest part of your grief, your mind is constantly on rewind repeating the trauma all day long. So, you have to really work at stepping outside of that grief and trying to be present so you don’t miss out on so much. Because, you do miss out on so much.
But, as time passes, being present becomes a little bit easier. You may not see it from day to day but you will from month to month. Tasha said that she can really say that she’s doing okay now. In the early days, she desperately wanted to talk to someone who had been through it. For her, to hear from them that they were okay allowed her to see that she was going to make it through and survive as well. She wants anyone who may be in the depths of their grief to know that you’re going to survive it and you’re going to be able to live a beautiful life. It may not be quite as colorful as what you thought it would be but you will still be happy and you can still smile and you can love so deeply and fiercely. It’s just a matter of taking what God has given you and trying to shape it the best way that you can. And to know that you can keep moving forward because that’s what we have to do, just to keep moving forward.
To contact Tasha or learn more about CuddleCots or The White Lily Project, follow the links below.
Closing
Thank you so much Tasha for being so vulnerable and for sharing more about Daniel and your other two losses. I know that it can be difficult to discuss, but I appreciate your openness as I know it will help other families who have endured the excruciating pain of losing a child.
And I will say it again, I commend you and your husband for all of your work and dedication to raising funds for the CuddleCots which are now helping so many families as well as the Angel of Hope Statue that will allow families to honor their beloved children that they have lost.
As we close out Pregnancy and Infant Loss Awareness Month, I want families to know that they are not alone. Enduring a loss can be a very isolating experience, but I encourage you to speak with your significant other, friends, and/or family members. I also recognize that they may not fully understand your feelings or your grief, so I encourage you to find a professional therapist or counselor to speak with. Additionally, just as Tasha mentioned, if the first person you speak to is not a great fit, then do not give up, but try another therapist. Your grief will never end, but it is an evolving process that will look different for everyone. We are thinking of you and I pray for peace and comfort for you as you navigate through it.
Also, for anyone who has not personally endured the loss of a child, but has a friend or loved one who has, I encourage you to continually check in with the parent, ask them about their child, and say their baby’s name. I promise, you will not make them uncomfortable, but yet you will actually acknowledge their continued grief and reassure them that their child has not been forgotten, which is one of the biggest fears for parents who have lost a child.
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