Coping

 

In some cases, preemie moms find out that their babies are sick during pregnancy, which can cause a great deal of stress and concern long before delivery. The fear of the unknown, and sometimes the fear of what’s known can be overwhelming. Although learning the realities of the health concerns can feel devastating, remember that being informed can make a difference in how well you can improve your baby’s chances of overcoming challenges. Here’s my story of how I navigated the worries of a high-risk pregnancy and delivery, and of how planning and hoping for the best made a difference. Four years ago, I delivered my son, Nathan Andrew Shirley 8 weeks prematurely with Dandy Walker Variant, but he’s beating the odds.

Carol Perry
Creator, Preemies.org

Part 1: Waiting Anxiously
Part 2: The NICU, My Preemie, and Me
Part 3: My Little Rock Star!

Part 1: Waiting Anxiously

I remember watching the monitor closely on the day I had my anatomy scan ultrasound. As the wand crossed my stomach and passed over my baby’s head, a dark circle appeared on the screen. My heart sank as I thought, “What’s that?” I asked the technician my question and the answer made me fear for the life of my child.

That dark circle turned out to be a cyst that was forming at the base of my baby’s brain, and it was expected to grow. No one knew if it would grow slower, at the same rate as my baby, or faster. My doctor said that it would have to be followed closely to see what would happen. The possibilities were terrifying and ranged from causing my baby to spontaneously abort; to stillbirth; or there was a risk that even if he was born alive, that he may not live for very long after he arrived. If none of those things occurred, the potential damage to his brain could have meant anything from having little to no impact; causing mental impairment; or causing him to have no quality of life.

My doctor explained that the cyst was not a mass that could be removed. It was fluid filled and there was nothing that could be done about it until after my baby was born – if he made it that far.

After I found out about my baby’s diagnosis, my doctors were immediately on the lookout for additional problems because there is a laundry list of associated disorders. I found out quickly that the more physical or genetic problems they found, the worse their outlook was for my baby after he was born. So the next step was to visually examine him with a more in-depth ultrasound to see if there were any physical defects developing.

I managed not to worry myself sick during this process and I found out that I was having a baby boy. I didn’t get the chance to form a reaction to that news, though, because I was so worried about his health. Within minutes, I was relieved to find out that all of his body parts were developing normally, that his vital organs were all functioning properly and that he had no additional congenital defects. I named him Nathan and tried to imagine him.

Nate and I weren’t finished there, though. The next step was to look for a possible cause or additional underlying genetic/chromosomal abnormality such as Trisomy 18 or Down Syndrome. I DID manage to worry myself sick during this part, but I said my prayers and managed to find my way to the designated hospital room for an amniocentesis.

Waiting for the results was excruciating, but I was AGAIN relieved to find out that there were no chromosomal abnormalities.

I was also fortunate enough to be able to get a more in-depth level of chromosomal screening with the same amnio fluid. This one was called called a micro-array. And for the third time, I got the best possible outcome of no abnormalities observed.

So after exhausting the medical testing that was available (I did this to help my doctors plan for Nate’s care after birth.) I was prepared for the reality of what was to come while still optimistic about the outcome because of how many things we had ruled out.

By then, I knew that we were dealing with an isolated occurrence of the Dandy Walker variant, which meant that Nate had a chance at the best possible outcome of a normal life.

He still had to get here safely, though, so we were watched very closely. And unfortunately, he wasn’t growing as fast as they wanted. (Although we had ruled out everything major, we did also have a single-umbilical  artery that was not supplying enough nutrition.) We made it to 31 weeks before the doctors started getting concerned that Nate was too small.

By this time, the cyst at the base of Nate’s brain had grown (as expected), but I was heartbroken to find out that it had grown at a faster rate than Nate. So in addition to Nate’s small size, our doctor was also concerned about how much pressure the cyst was exerting on his brain. If the pressure was great enough, it could stop Nate’s brain from being able to perform the functions needed to sustain his body. There was still a chance that he wouldn’t make it.

I was EXTREMELY stressed. And that was just making things worse.

I got my first steroid shot that week to speed the development of Nate’s lungs, and I had to have it repeated the next day. That was on a Tuesday and our doctor wanted me to return that Friday so that she could take another look at Nate. (She said to plan on getting checked out twice a week from that point on.)

By 3am Friday morning, something felt very wrong and my mom rushed me to the hospital because I started getting sick.

Nate was delivered later that day by emergency c-section at 32 weeks, weighing 3lbs 1oz and measuring 14 inches.

Part 2: The NICU, My Preemie, and Me

He was breathing! Amazingly, Nate had apgar scores of nine and eight and gave a hearty yell when he entered the world. That was a huge first hurdle. The next big concerns were the size of the cyst growing at the base of his brain, the formation/condition of his brain, and his rapid heart rate (tachycardia.) The doctors also needed to monitor his breathing just to make sure he was doing a good job. He did have tachypnea. (That meant he was breathing quickly and shallowly.)

While I was in recovery, I found out that Nate came early because I was sick. My doctors told me that I had developed preeclampsia and that my white blood cell count was rising rapidly on the day that they delivered Nate. I had reached a level that could have resulted in a seizure or even death. I was so sick that I wasn’t allowed to go see Nate for the first 48 hours after his arrival. My doctor explained that she wouldn’t allow me to go into the NICU because I was still at high risk of having a medical emergency even though my condition started to improve after Nate’s delivery. She said that she couldn’t take the chance of me having a medical emergency while I was visiting him in the NICU, where treating me would be difficult and where the noise and excitement could be harmful to some of the more critical babies.

The first photo of Nate that I received from the NICU staff. I found it taped to my bedside when I woke up in recovery after he was born on Dec. 12, 2008.

Before I had a chance to feel bad about not being able to go see my baby, the NICU nursing staff started sending me pictures. I got two beautiful close up shots of Nate alive and well and being taken care of. The pictures helped me to connect and bond with him, even though I couldn’t be there. Thanks to their thoughtfulness, I fell deeply in love with Nate before I ever held him. My nurse also gave me the NICU phone number and I was able to call and ask how he was doing. The care that we received was incredibly personal, kind, and professional. I say we, because I needed their care as much as Nate did – physically, mentally, and emotionally.

After I was discharged, I was fortunate enough to be able to visit Nate every day. Seeing him almost became a ritual where I got my hospital visitor pass, went through NICU security, washed my hands thoroughly, used hand sanitizer, then made my way to his bedside. Once I was there I took care of him in any way I could and whenever I had the opportunity. I bathed him, held him skin-to-skin, read to him, sang softly, sat by his bedside, and waited.


Home video of Nate in the NICU at UNC Children’s Hospitals, filmed in January 2009.

When I wasn’t caring for Nate, I was taking care of my older son. As a single mom, I knew that they both needed me. I did what I could but couldn’t ignore the fact that my older son’s life had changed dramatically too. I felt so guilty whenever I couldn’t be there for either of them, but there was no way that I could be in two places at once, so I went back and forth every day.

There were times when I felt like my whole life was dedicated to willing Nate to get better. When I wasn’t doing that, I spent most of my free time looking for information about what was going on each day, and what it meant for Nate’s future.

I lived in limbo between hope and fear and went through the process of grieving over what Nate’s life could have been. Then I started to heal, grow stronger and accept whatever Nate’s life WOULD be. I didn’t know what to expect, but Nate was made of sterner stuff than just his tiny, fragile, thin-skinned body and he needed a mom who was made of sterner stuff too.

Nate wearing his first preemie outfit after graduating from using a heating lamp for warmth on  Jan. 9, 2009.

In the course of Nate’s NICU stay, our doctors were constantly surprised at how well he was doing. At one point, our lead doctor said that Nate was “doing everything that he should be doing, and he’s not doing anything that he shouldn’t be doing.” He also said “if we didn’t know already that there was a Dandy Walker diagnosis, we’d probably never have found out, because he’s not showing any signs of the normal deficiencies and abnormalities.”

I’m a believer in the power of prayer. The moment I heard those words, I felt that God had smiled on me.

Even though he was doing well, Nate’s doctors had to find out the condition of Nate’s brain and examine the cyst that had formed at the base. They did an ultrasound and CT scans of Nate’s head and it showed that the cyst was SIGNIFICANT. When I saw the images, it looked to my untrained eyes like half of Nate’s brain was missing. The doctor said that it was fully intact, though, and that the corpus callosum was also intact (That’s the connection between the two halves of the brain. The fact that it was intact meant that Nate would likely be able to have at least SOME motor skills.) But there was still a great deal of fluid filled space that was pushing his brain into a much smaller area of his skull than it really needed. Nate’s neonatologist was concerned that the pressure being exerted on Nate’s brain would mean that he had brain damage.

Nate continued to grow bigger and stronger, though. After seven weeks in the NICU, he was allowed to come home in January 2009.

Part 3: My Little Rock Star!

My preemie was one of the newborns who were dealing with multiple conditions at birth. He had a substantial, inoperable, fluid-filled cyst at the base of his brain that was pressing against his brain. This pressure caused his ventricles to dilate (hydrocephalus) and he ended up having neurosurgery to have a shunt placed in his skull as the treatment. Before the surgery, Nate’s head was oversized and his doctors were measuring it repeatedly to track the growth of the cyst through the increases in his head size. After the surgery, there was an IMMEDIATE improvement in the shape and size that made Nate look completely normal. (Even though it was difficult to go through, my online research gave me optimism about the surgery. The little bit of information that I had found showed that children who had shunts placed as treatment for Dandy Walker had positive outcomes. There were even reports of normal development. After the shunt is placed, their bodies catch up to their oversized heads to make them look even MORE normal.) Our neurosurgeon was amazing and also did a lot to ease my fears. The first time that he saw Nate, he cradled him against his chest and cooed to him. How amazing is THAT from a neurosurgeon?!?

Nate in pre-op before his second birthday and before his second urology surgery on Dec. 3, 2010.

So, to bring you current. Nate has had bilateral inguinal hernias repaired. He had neurosurgery for the shunt placement and two emergency neurosurgeries to correct shunt failures. His rapid breathing and heart rate turned out to be a Patent Ductus Arteriosis (PDA), which was an open valve leading to the heart that was diverting blood to Nate’s lungs. This valve is a natural part of prenatal blood flow. It’s necessary when mom is doing all the work, but is supposed to close at birth. As a result of it remaining open, Nate went into congestive heart failure before he was two months old. To treat the congestive heart failure, Nate’s PDA was closed with an outpatient cardiac catheterization procedure shortly after leaving the NICU and he rapidly improved.  At birth, we also discovered that Nate has a urology condition which he’s had six surgeries to repair. (This brings our surgery total to twelve.)

Nate turned his head before his picture was taken, clearly showing his shunt and neurosurgery scars.

From that description, you’d think that Nate is a pretty sick little guy. But he’s developing beautifully and is actually showing no outward signs of having been through so much or of having so many issues to deal with going forward. The neurosurgery left a horseshoe shaped scar above and behind his ear, a one inch scar behind his ear, and you can see a lump through his skin outlining the shape of the shunt. He also has a scar on his abdomen where the tube to drain the excess brain fluid was positioned. The hernias repair and urology scars aren’t visible at all.

During his first year, Nate received physical therapy, occupational therapy, speech therapy, home health nursing, and care coordination through a North Carolina agency for children with special needs called the Children’s Developmental Services Agency (CDSA). He needed all of their help to make sure that he hit all of his developmental milestones.

Big brother Evan spending time with Nate while playing a piano.

But soon after coming home my little rock star was smiling at me. He was babbling “ma-ma-ma-ma” when he saw me. He was trying to crawl. He was chewing on everything he could get his hands on. He was laughing with his whole body when I tickled his tummy. He was, and is, absolutely beautiful. Now that he’s 4, I can look back and say yes, it’s taken a LOT of hard work to get him to where he is right now.  And even though we’ve gotten past the major medical interventions, it’s still possible that we may have more to come.

But I’m certain now that he’s going to be OK. And like I said, he’s beating the odds.

INFORMATION FOR PARENTS:

Get Connected

The March of Dimes has developed a website designed to help NICU families connect with each other online. You can use the website to share your story, make friends with other NICU families, or ask other NICU parents questions about what to expect.

Talking about what is going on with your preemie can help to relieve some fear and stress through the emotional support that other preemie parents can provide. Some parents may even find that seeking ways to comfort and support others can lift your spirits and give you strength as well.

Anxiety and Stress

Coping with the emotional and physical stress of having a sick newborn can take its toll on new moms, dads and preemie families. It is important for preemies to have a strong and healthy support system, so take the time to eat well, exercise, keep up with prescribed medications and rest.

It is normal to feel a wide range of emotions, but if you feel that you are overwhelmed with sadness or worry, schedule a doctor visit for yourself to talk about your feelings and ask about getting medical help if needed.

Writing

Keeping a journal may provide you with a way of letting your emotions out while also giving you a tool to keep track of how well you and your little one are doing. You may find that you are more able to do this on some days than others, so be kind to yourself and simply allow it to happen if, when, and as needed.

Some parents may find that living day to day is all that they are capable of. They may only be able to write a few thoughts or they may need to pour everything out at once, then they may need to walk away from writing for a while before they have anything else to say.

Some parents may only need to write every now an then about everything that’s gone on since the last time they’ve written anything. Other parents may need to write daily or even several times a day, whenever they need to collect/express their thoughts and feelings.

There is no right or wrong way to keep a journal (it could be online or in a notebook – and it could be random thoughts, creative expression, or a clear description of what you’re thinking feeling and experiencing). It may help with coping, though, so try it out to see if it’s a helpful tool for you.

Dealing with Loss

Although every baby is a blessing and a miracle, sometimes his/her challenges are more than s/he can overcome. Each parent may have his/her own way of coping with sadness or loss, but parents and families are encouraged to take advantage of the resources available to talk, seek company, seek counseling, seek prayer, or seek medical help as needed.

Your hospital has social workers and counselors, and many hospitals also have religious leaders or community resources and can connect you with other parents who are there to help with your next steps.