Jeremiah's Story: Parent's Letter Project Bowel disorder (Hirschsprung’s disease and Beckwith Wiedemann syndrome)- Jeremiah’s mom

Please allow me to share our story.

We had one healthy son, preparing for the delivery of what we thought would be our second, healthy son. I waited for his first cry...and I heard it. It was wonderful to hear. Everything was going well. I began my recovery and started requesting my son from the nursery. The family and big brother met him briefly, but now I wanted to feed him. Eventually a neonatologist came in, sat down, and spoke with me. My son had not had his first bowel movement and his belly began to distend, growing larger. As a precaution, they had him picked up by the Children's National transport team and taken to the hospital in Washington, DC- as the hospital we were in had no Neonatal Intensive Care Unit (NICU). The next day, I spoke with a nurse who said he was not getting any better and that his bowel had ruptured (called perforation). They suspected he had Hirschsprung's disease and it was virtually confirmed by this event. He was rushed into the operating room (OR) and Anthony Sandler, MD, repaired the perforation and did a colostomy.

I was baffled because just the day before I heard my baby's first cry and the next I was stuck in my room- without my baby. I was scared because I was clueless. I was angry because I was never told what could have been, and frustrated because I could not leave to be with him. Luckily, my husband was able to stay with the baby while our older son was with family. My life seemed to have been flipped upside down. You may be feeling the same way at this moment. If you are experiencing a situation with a sick child, you did not expect it. Even if you find out early on, you did not know before it happened. You will feel pain. That is okay. Tears may come, especially at times of extreme mental, physical, or emotional exhaustion. Let it out. You do have to grieve for a moment. There is almost a "loss" for the child you had expected. Though you may grieve, do not stay down. I learned in the beginning, my child was strong, and that I, through Christ, was strong! Understand that you are in good hands at Children's National. The doctors and nurses are great at what they do. And there are steps you can take to feel empowered and in the lead of your child's health care.

I spent a lot of time on the phone with nurses when my husband was not there. I called every shift change and after doctor rounds. The nurses are very well-trained and I have rarely met a NICU nurse whom I did not like. Let them know that you will be asking questions. I wanted to know everything about his care. I wanted to know what every drug was given was for, what every machine beep indicated, and what every machine and number were. Try making it a priority to be polite, respectful, and appreciative of their care, even if it is their job. That helped us to have a mutual affection and respect for one another.

Now, Dr. Sandler, my son's surgeon was and is a God send. At this point, my baby is almost 4 1/2 and is very healthy. By the time he was 2, he had had eight abdominal operations (seven of which were performed by Dr. Sandler), the other by Philip Guzzetta, MD. Obviously, my son did not have a "typical" one or two operation case. His first operation was the day after he was born, (which resulted with an ostomy), two more perforations, more ostomies ("a bag"), multiple reversals to "hook him back up," and finally an alteration to an old procedure and, voila! He was all fixed. Through the ups and downs and the uncertainty of what was to come, I asked questions. The surgical team was available to personally answer my questions. At one point, I even had cell phone numbers. Do not be afraid to ask for what you need! If you need answers and need a doctor, request as many times as needed to speak with someone. As a young mother, I learned very quickly to be aggressive. You are the only voice your child has right now.

If you have other children, there are child life specialists that can assist you as you introduce the child to the situation. They can help answer their questions, and inform them in a non-threatening way in terms they can understand. They can explain what they will see. They are very friendly and I would say "a must" if your child will visit the hospital. Also, there are advocates for the NICU and their sole purpose is to support you! Use them. They can be helpful if you and the staff don't exactly agree. There are chaplains available for spiritual counsel, request them. If you are a member of a church family, your minister is permitted to visit anytime. They can play a huge role in supporting your family. If you haven't already, contact your pediatrician. Let them know what is going on and suggest they speak with the nurse, and have the hospital doctors contact them. Keep your pediatrician informed so that when your child gets better, they are aware of his or her condition, or in case you do not understand the care plan or want another opinion.

Also, use the nursing room if you are breastfeeding. They provide you with what you need to start pumping for the baby. Once the baby is well enough, if you cannot nurse, they may be able to give the baby your milk. If you need help and are nursing, they have great lactation nurses who can assist you, as well.

If you are having surgery, ask the doctor if he would have a nurse come out and update you periodically. Afterwards, once you find out the details of the procedure, get online and educate yourself! Keep a journal for any questions you may have that pop up.

Jeremiah was born October 9, 2006, and was released on October 31. Looking back, the 21 days he was in the NICU doesn't seem like much, but in the moment, it was an eternity. The hospitalizations we had for enterocolitis, repeated perforations, RSV, and "scares" (times that I freaked out not knowing what was going on) happened frequently for 1-2 years, but I learned to trust my instincts. If he was not quite right and his bowel habits were not his normal, the pediatrician would send us to the hospital or do an Xray. Sometimes a stomach bug would dehydrate him. Either way, trusting myself paid off. Trust yourself; you are the parent. But I do recommend having the pediatrician call ahead of you; it saved a lot of time.

You can do it, if you are caring for any kind of ostomy. It was a family event. It made for frustrating outings at times, but also was the source of many laughs. As we strolled the halls of the heart and kidney units, knowing some children may never leave that hospital, we saw how blessed we really were. These tough moments probably won't last forever. I look at my son now as he changes and I see scars and think "How his life has changed!"

As I conclude this letter to you, I am praying for your family. May God bless you and keep you in His strength as you continue on this unexpected journey.

Sincerely,

Jeremiah’s mom, Brenda

Treatment Team

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