Megan Kroff shares how she kept her faith having a child with a heart problem and Prader-Willi Syndrome as well as her personal struggles with anxiety and bipolar disorder.

Megan’s Bio

Megan was born and raised in St. George, Utah but has also lived in Texas. She met and married the love of her life, Justin, while attending Dixie State College. While living in St. George, Megan gave birth to their special daughter, Sarah. It was a struggle to keep her alive and her birth sent them spiraling into the special needs world.

Next they had their son, Spencer. He too was a miracle. While she was pregnant with him, they found out he had cysts on his brain and we were told he could be born with Trisomy 18—he may not survive birth.

When Sarah turned 3 years old she was finally diagnosed with Prader-Willi Syndrome.

Megan and her husband Justin have experienced job loss, miscarriage, hurricanes, bed rest, and Megan was finally diagnosed with a soft form of bipolar, which explained her depression and anxiety/panic attacks. These challenges gave them opportunities to grow.

Megan and Justin are now living back in Utah where they are on the Board of Directors for the Utah Prader-Willi Syndrome Association. They love traveling together.

Megan loves being a mom more than anything in the world. Family is her passion. When she has alone time, she loves reading, Pilates, cooking, and organizing other people’s houses—no joke!

Megan’s Story

Sarah’s Birth & Story

We begin Megan’s story with a normal first pregnancy. Sarah was about a week overdue, so the doctors decided to induce her. The induction went very quickly. Sarah was born an hour and a half after they started, which was very fast for a first baby. Sarah was born blue. Her APGAR) scores were very low. She wasn’t breathing, and didn’t even cry when she was born. So, the nurses immediately whisked Sarah away down the hall to help her. Megan and her husband didn’t even get to see her.

They brought her back when she was pink and warm. When Megan went to breastfeed Sarah she didn’t have any kind of a sucking reflex or desire to eat. She was very weak. Sarah’s pediatrician seemed concerned she was so little and was losing weight.

Babies are often born with a hole in their heart which will close up when they cry. But Sarah’s wasn’t closing up. So the little hospital in St. George was communicating with Primary Children’s Hospital up in Salt Lake City about the hole in Sarah’s heart. After keeping Sarah for a week, they sent her home with an appointment up a Primary Children’s hospital.

Complications

Not long after they had been home, Megan was on the phone with the pediatrician setting up an appointment and Sarah turned bright blue. The nurse told her to bring her right into their office which was a block away. When they arrived the doctor grabbed her and the oxygen and got her breathing again. Their doctor was a man of great faith and he prayed with them. He decided they needed to drive up to Salt Lake City right then to see the cardiologist.

After getting Sarah stabilized they decided to do the 5 hour drive up to Salt Lake City instead of doing a life flight. They arrived at her sister’s house who lived a few blocks away from Primary Children’s hospital and started to eat. While they were eating Sarah’s oxygen levels began dropping, so they decided to take her to the Emergency Room.

This started the lowest low Megan had ever experienced. When they got Sarah to the hospital she was in heart failure. The doctors and nurses were frantically working on her and while Megan and Justin sat on the bed across from them watching them work on their daughter’s bare body. They sat and clung to each other as a Code Blue went off and more doctors rushed to the room.

Changing Her Prayer

Megan remembers praying a lot, “Father, save her! Take this from her. Please don’t let them poke and prod her one more time. I can’t see her in that pain.” Megan was scared and worried she would never get to “meet” this little girl and raise her.

After watching her daughter struggle for life and be poked and prodded Megan’s prayer suddenly changed to, “Father, take her. I can’t watch her go through this pain anymore.” Then Megan continued her prayer, “I can live a life without her. I know You’ll help me do that. I know I won’t be okay because it will hurt, but please, take her.”

Then Megan’s prayer changed one more time to, “Father, do what you will.” Immediately after Megan prayed this prayer, the alarms stopped going off and Sarah’s oxygen began stabilizing to the point that doctors and nurses started to walk away.

Family Support

Then the doctors explained Sarah was in heart failure. Her heart was very enlarged. The doctors then told them if they had anyone who they wanted to see this baby alive they needed to bring them to the hospital right now.

The doctors ended up admitting Sarah to the hospital where she stayed for a month while they did tests every day.

Both Justin’s parents and Megan’s dad drove up from St. George to be with them. Megan’s mom was already there. The nurses joked they won the award for “Best Family Support” because they always had people stopping by to love and encourage them.

Physical Problems

The results of the tests on Sarah showed she had a VSD (a 9mm hole in her heart) and Ebstein Anomaly (valve that doesn’t close correctly in heart). She was also diagnosed as “failure to thrive.” Due to how little and how weak she was, as well as the location of the hole on her heart the doctors were very hesitant to want to do heart surgery.

These symptoms of being a very small baby with failure to thrive is very typical of babies with Prader-Willi Syndrome, but Sarah wasn’t diagnosed for a few more years.

The nurses were able to teach Megan how to feed Sarah through and NG tube (tube which goes through the nose and down to her belly) because Sarah was too weak to nurse. So Megan pumped her milk to feed to Sarah. They also tried to bottle feed her. But Sarah ended up having her NG tube until she was a year old when they were finally able to teach her how to get enough fluid from a cup.

Sarah actually never ended up needing heart surgery. As she grew older the hole started closing on its own and it is so small now that she doesn’t need heart surgery anymore. They have kept an eye on her Ebstein Anomaly, but she is doing okay with that as well. Megan feels these were miracles from God.

Spencer’s Story

When Sarah was about a year old Megan felt like she needed to have another baby, but this was a little scary for her. So she and her husband prayed about it really carefully.

They got pregnant and people were kind of judgmental because they had a child with special needs already. But they knew it was right for them.

Megan’s second pregnancy was treated as a high-risk pregnancy because of all of Sarah’s challenges. There was a 50% chance they could have a second child with a heart problem, so they were watching her second baby’s heart very carefully via ultrasound.

The Ultrasound

After a while the technician walked out saying, “I’m going to go get someone who can talk to you about this.” They sat there stunned wondering what was going on. Then a doctor came in and explained their baby had large cysts on his brain which can sometimes turn into Trisomy 18. This means the baby will have rock bottom feet and clenched little hands and would live only a few weeks if they survive birth.

Megan was shocked and asked God, “Why? Why Lord? You told us you had another baby for us. That’s not for us! That’s a quick hello and I’m taking him from you.”

So, this was a hard thing to process. Later in the week they visited their doctor who suggested an amniocentesis (where they go draw the baby’s blood with a really long needle) to see what was really happening. So, they had a couple of weeks where they could think about what they wanted to do.

Crisis of Faith

During this time Megan kind of when through a crisis of faith where she questioned God a lot. But she stuck with the habits which had gotten her through previous hard times: praying, reading her scriptures, going to church–but she didn’t feel it. It kind of felt like she was going through the motions. She knew these things had helped her feel peace in the past but she just wasn’t feeling it this time.

Megan asked to be prayed over the night before the amniocentesis and finally felt peace. When they went in the next day the doctor abruptly asked, “Why are you here?” They looked at him baffled and explained about the cysts, and the doctor flipped the screen to show them and said, “There are no cysts on your baby’s brain.”

Peace and Answers to Prayer

Megan wishes she could say this was the answer to her crisis of faith, but the peace actually came before when she was praying and felt a whisper in her mind saying, “How special are you, not matter what happens, to be a part of bringing one of my children into this world?” Then there was a pause and then another whisper, “And how special is this child who needs to be born and have a body.” This experience before the miracle brought her peace along with a boost of hope and strength.

Spencer’s Delivery

She ended up having Spencer 3 weeks early and started hemorrhaging. After her husband offered a prayer/blessing for her the bleeding stopped and Spencer was in her arms 20 minutes later. And Megan cried as they handed her Spencer because he was crying and he was bright pink, whereas Sarah never cried.

What is Prader-Willi Syndrome?

Prader-Willi Syndrome occurs when a baby is born with a missing chromosome either by deletion or because of something called UPD (Uniparental Disomy) meaning the maternal 15th chromosome is there twice. The only other way to get Prader-Willi Syndrome is if you have a traumatic brain injury in a very specific spot–then you will get the same symptoms as Prader-Willi Syndrome.

Getting a diagnosis now is much easier than it was when Sarah was born. Her initial blood tests on her chromosomes came back that everything was fine. But when she was about three they came out with a test which was 100,000 times more accurate which showed she had Prader-Willi Syndrome. Sarah was doing so well at this point that the doctors didn’t believe the test. So, they did another test which showed she definitely had Prader-Willi Syndrome.

Prader-Willi Syndrome Eating Challenges

An interesting thing about these children is they go from having “failure to thrive” to flipping a switch when they are 2-3 years old where they eat voraciously all the time. Megan and Justin would find Sarah up in the middle of the night eating cereal out of the box. Sarah started getting quite chubby. The problem was she would never stop eating. These kiddos never feel full or satisfied.

Megan once had a Prader-Willi Syndrome expert explain to her that the anticipation of taking a first bite of a steak when you are really hungry is like every bite for them. They are always starving. So, Sarah has a complete obsession about food.

The thing which complicates this is Prader-Willi children usually have a really slow metabolism. So to burn calories and maintain a healthy weight is so challenging for these people. They have to have a nutritionist help Sarah with her diet and they have to be careful every single day.

Developmental Delays

Sarah is also developmentally delayed. So teaching a child with a disability that they have a broken tummy and have to stop eating was very challenging. They have a lock on their pantry, and a bike lock on her fridge. They also have to lock up their garbages because things aren’t “gross” to her. One time they were hiking as a family and Sarah picked up a bird poop and popped it in her mouth because it looked like a chocolate chip.

There are tantrums and anger issues and usually everything is tied back to food.

Other Challenges

Another challenge about missing part of the 15th chromosome is that Sarah’s hormones are messed up. So her teenager years have been even more challenging. Megan has been kicked down the stairs. She has had to have men help her carry Sarah out to the car from church while she was throwing a tantrum. The prognosis is hard to see because each child with Prader-Willi is missing differing amounts of the 15th chromosome and so some even out in their adult years and some don’t.

Megan’s Anxiety and Depression

After her family moved to Houston, Megan had a miscarriage and when she finally she got pregnant she was placed on strict bed rest three months before her baby was due.

Megan is a pilot’s wife–Justin is gone for days at a time traveling. But when he was home, he was home. He was laid off just as Megan went on bed rest and ended up getting a job selling furniture. At the time this was a huge stress, but as they looked back on it it was such a blessing that he was home every night to help take care of their kids. He wasn’t traveling.

After a healthy delivery they took baby Allison home and Megan was so happy to be off the couch. She was baking bread, teaching piano, teaching pre-school and just enjoyed being happy and healthy. After four months Megan’s body began shutting down.

Chest Pains & Anxiety

One day she felt sharp pains in her chest and she felt like she was having a heart attack. Justin threw her in the car and took her to the hospital. At the hospital they started asking her questions like, “Are you under a lot of stress? How are things at home?” Megan was mad they weren’t checking her heart. They finally told her she had a panic or anxiety attack.

At first Megan didn’t believe them, but as she met with other professionals she realized they were right. From that day on her panic and anxiety got worse. She got to the point where she couldn’t answer her phone, open her door or talk to people. This was very unusual for her because she is a very social person but she couldn’t be social anymore.

Therapists

After trying several therapists, Megan finally found a good therapist and found some medication which helped her. She also found a psychiatrist who was able to correctly diagnose her with a soft form of bipolar. He pointed out the phase right after she gave birth to Allison for four months was a manic phase–where she was functioning way beyond normal. He also explained her body simply couldn’t keep up with everything her mind thought she could do.

This psychologist also explained the reason Megan kept getting worse on anxiety medication was because she was bipolar. So, they got her medications leveled out and then she was able to work with her therapist to address the root of the problem: stress.

The TERRAP Program

Megan’s therapist helped her go through a 20-week program called TERRAP) which taught her how to deal with stress. Megan feels her stress is still there but she has learned how to function so it doesn’t bother her anymore. The TERRAP program was structured so her therapist would teach her something and then Megan would go home and do the workbook, write in her journal and go back. Megan began to see patterns as she journaled about her “self-talk.” She found she worried about what other people thought, and was worried about things she knew God didn’t want her worried about.

Lessons Learned

Lesson 1. Keep Working Toward Dreams

Set goals and make dreams and then figure out baby steps to make it possible. Don’t let Prader-Willi Syndrome or another disability control your family.

An example of this is Megan and Justin wanted to travel. Justin is a pilot. They didn’t know how to do this with a Prader-Willi child, but they realized God knew them and their goals and desires and He would help them make this work. So they taught Sarah the Red, Yellow, Green Program) so she could learn what foods were good for her so when they traveled she could order off a menu at a restaurant. They also practiced getting on an airplane with her (thank goodness dad is a pilot).

A second example is, Megan’s husband Justin is very athletic and so they had to figure out how to ski, hike, and run as a family. They patiently taught Sarah to ride a bike, walk around the block and then run with them. She is now on her school’s Cross Country team, which is unheard of in the Prader-Willi world.

Brainstorm with others to help you figure out how to achieve your modified dreams and include God in this brainstorming. He will help you figure out how to survive and thrive with His help.

Lesson 2. Genshai

Megan has stood in the grocery store, the zoo, and even at church and been judged harshly. People have said things which could have destroyed her. What Megan has come to realize is those people don’t know what she has gone through to get Sarah out the door. People don’t understand why she is talking about zero calories in the grocery store aisle with young children because it doesn’t seem right.

Megan stumbled upon a Hindi word which has become one of their family’s mantras. The word is Genshai. It means “Never make someone else feel small.” To Megan this word almost translates to charity or the love of Christ. “It means realizing every person up and down your street…has something going on behind their door that you don’t know about. You need to love them and treat them like Christ would. Never make them feel small.” This is the mercy Megan wishes people would show her.

Lesson 3. Life is Fragile

“I almost lost my babies. They almost disappeared on me.” Megan continues, “I was in a really bad spot in my life and I am glad I bounced back, but what if I hadn’t?”

Going through hard times has also taught Megan to resolve things with relationships which are important to her, because life is too short and too fragile to leave things unsaid or undone.

Lesson 4. Keep an Eternal Perspective

“I know that who I am is not just what I am here on this earth.” Megan says, “I know we existed before we came here to earth and that we are going somewhere after.”

It is hard for Megan to be stuck telling Sarah why she can only have half a glass of milk, and why she can’t have another plate of food every day. But, Megan knows she isn’t going to be stuck in this recurring stress forever.

Megan looks forward to the day when she will stand in front of Sarah with her perfected body and they will be able to have a normal conversation.

So, keep an eternal perspective in mind.

Advice

1. Christ is the Answer

When I asked Megan what advice she would give to people who are struggling she replied, “Christ is always the answer. Start there first, always.” Good habits–even when you are going through the motion will always take you back to Christ. Things that have helped Megan are:

• Prayer
• Reading scriptures
• Listening to music

There were times when Megan felt God was very far away from her, but deep down she knew He wasn’t. She knew she was the one who was far away and if she just did the little things she would find her way back to God. And she did. Megan shares that as she turned to God, “Words came, dreams came, feelings came, answers came, healing.” God helped her and carried her through her challenging...