September 30, 2007


We received confirmation that we will be flying to Philadelphia on Wednesday. If we are approved for the study, we will have to let CHOP know on Monday whether we are willing to be part of the study. If we opt in and are placed in the surgery group, we will have the surgery on Tuesday, the Lord willing. Please pray that the Lord will make His will for us plainly evident--my biggest fear is going into Monday not knowing whether we should go for the surgery.

Fiona will be staying with our pastor's family while we are gone. If we have the surgery, I'll either fly back several days later to pack up and take her with us to Philadelphia or my folks will drive her out. Please pray that the Lord will give Fiona peace in our absence.

For the next few days, we've got a lot of packing and planning to do--I am trying to forget just how much we have to do yet. Not only do we need clothes for know, but we have to be prepared to stay in Philly as the weather gets colder. We also have to make sure that our house is taken care of here while we're gone--the mail, stop the paper, the leaves, the snow, put in the storm windows, rip out the dead annuals, trim down the perennials, cover the hydrangas, set up timers for the lights--we thank the Lord for good neighbors and family who has volunteered to help out.

September 25, 2007


I just found this on CHOP's website--talk about encouraging:

Best in the Nation
In an exclusive survey, Child Magazine has ranked The Children's Hospital of Philadelphia the best pediatric hospital in the United States for the fourth consecutive time. In its comprehensive 2006 survey, the magazine also ranked Children’s Hospital’s pulmonology, neonatology, oncology and orthopaedics divisions number one in the nation and the cardiac center and emergency medicine ranked second.

The survey calculated results based on criteria including survival rates, the number of complex procedures and intricate surgeries, volume of research studies, efforts to reduce medical errors and the quality and training of the doctors and nurses — as well as child-friendliness, support for families and community involvement.

Children's Hospital also ranks as the nation's finest in a survey of pediatric hospitals by U.S.News & World Report. The magazine's 2007 guide to “America’s Best Children’s Hospitals” ranked us as the best hospital for children in the United States for the fifth consecutive year.

October 3rd Departure

CHOP confirmed that we will fly out on Wednesday, October 3rd to Pennsylvania. We will be staying at the Ronald McDonald house in Camden, NJ. Ronald McDonald houses are committed to serve families of seriously ill or injured children. You can see the family rooms by clicking here. We were encouraged to find this testimonial by someone who had the prenatal surgery.

We will be staying there until October 9th. We also received confirmation that on the 8th, if we did choose to continue and we were randomized to have the prenatal surgery (50% chance), surgery would happen on Tuesday the 9th. I would be in the hospital for 5 days and then continue with 2 weeks of complete bed rest of moderate bed rest until delivery. I am not sure what their definition of 'moderate' is...

(Added by Matt): I know their definition won't be as limited as mine is.

Why We Named Whitney

We've had a few people express surprise that we named Whitney already. We have two reasons:

First, Whitney is a person, and it is easier to pray about a person instead of "Matt & Susan's baby" or "the baby." By naming her, we hope that people will have an easier time praying.

Second, Whitney is a person, not a blob of living flesh. People have names, blobs don't. By naming Whitney, we are trying to honor her personhood as well as the God whose image she bears. We have already been asked if we want to "change the outcome" of the pregnancy. By naming Whitney, we hope to clue the medical personnel we deal with that life begins at conception. We also hope to deter them from referring to Whitney as a fetus.

We had a name for her if she had been a boy, but we're not telling.

September 24, 2007

CHOP update

The date for our consultation is now scheduled for October 4th, 5th, and 8th. We will fly out on the 3rd, Wednesday, and begin testing on the 4th.

2 hour ultrasound
1 hour MRI for Whitney
20 minute Fetal Ecocardiogram
1 hour session with a Social Worker

Consults with all Physicians
Surgeon who will do the c-section
High Risk Obstetrician
Nurse Practitioner
Genetic Counselor
Neonatalogist (in case Whitney is premature)
Tour the NICU
This will definitely be a birthday to remember for me!

Then on Monday we will meet with the Neurosurgeon, make our decision and if we decide to go ahead then wait for them to tell us what test group we will be in. This is decided by a randomized computer as to which group we will be in. We know that ultimately God is in control of this decision although there is still a good amount of stress involved. We need to prepare for the long haul not knowing what is ahead of us.

Does anyone know how to pack for 3 months?

Prayer in Time of Decision

A colleague of mind recently gave me this prayer:

Lord God, King of Heaven and earth,
We are faced with decisions in life
And we do not always know what is best.

You have given us the awesome power to choose freely
As well as the intelligence to choose wisely.

Inspire us and guide us to Your choice.
Once you have shown us Your Will
Let us not look back
In the firm knowledge that we have done our part.

I would add "Give us courage to submit to Your Will and obey" once He has shown us His Will.

CHOP Called!

We spoke with the Children's Hospital of Philadelphia (CHOP) today, and started the ball rolling to go out to Philadelphia. Very encouraging. The intake people were friendly and professional, and very efficient. They'd like us to fly to Philadelphia on October 7 for the consultation. More details to follow.

In other news, I had lunch with one of my ministers today--very encouraging. He did a great job recognizing that we don't want to just talk about Whitney and spina bifida.

September 23, 2007


It's probably no surprise that I'm a little impatient right now. Last week, we finally completed all the tests that were necessary to qualify for MOMS. Now, we're waiting to hear from them about when we will go to Philadelpia. In the meantime, our lives are on hold. I hate waiting . . .

Spina Bifida Picnic

Saturday we were invited by the West Michigan Spina Bifida Association to their annual picnic. We decided last minute to attend and were a little nervous about going. We had a Youth Leaders meeting that day and guess where the picnic was, about 1 1/2 miles away. So, we dropped in and met parents and children in our area with Spina Bifida. They were very kind and encouraging to us. It was good to talk with a few parents about their experiences and with a few of the kids about school and other activities. It was wonderful to hear that out of the kids we met they all attend schools in our area that integrate them into the classroom and a few of them are involved in hockey, tennis and basketball. We are very blessed to have access to these activities nearby. It was also hard not to notice that they were all in wheelchairs. We left with a more realistic view of what our family's future holds and disappointed that Whitney may have to be in a wheelchair. We are holding on to hope knowing that God can do a miraculous work in this little one's body and we will not cease praying for that.


Within a few days of learning that Whitney has spina bifida, we learned about a clinical trial called Management Of Myelomeningocele Study or MOMS. Apparently, three hospitals have been operating to correct babies spinal lesions in utero instead of waiting until after the baby is born. The theory is that by correcting the spinal lesion while the baby is still developing, the baby may have more lower body functions and less need for a shunt.

In 2001, the National Institutes of Health funded a study to determine whether this procedure should be more widely practiced. The study is recruiting 200 women to participate. Half the women will have the in utero procedure while the other half will bear the children at term and the lesion will be corrected with the traditional procedure. Before the study started, 248 women had the in utero procedure.

We quickly learned that the study has very stringent requirements including that the surgery occur between the 19th and 25th week of gestation. (We found out that Whitney had spina bifida in the 21st week, and we are now starting the 23rd week.) We made contact with MOMS about a week later, and started learning about the complications and potential benefits from the trial. All the while, we have been praying for the Lord to show us how He wants us to proceed. He has brought doctors and women who have participated in the study into our lives to give us additional information and counsel. He has reassured us that the people who are managing the study are among the best in caring for spina bifida in the country. So far, He has kept the door wide open to participating in the study.

The Surgery
The in utero surgery involves opening Susan's uterus to cover the exposed spinal cord on Whitney's back. Specifically, one doctor would make a midline C-section incision to reach Whitney, a pediatric neurosurgeon would correct the lesion, and then the first doctor would close the uterus.

After the surgery, the woman is put on full bed rest for about a week, followed by another week and a half of moderated bed rest. All the while, the team works to avoid pre-term labor. Assuming that the baby is not born early, the baby is delivered by c-section at 37 weeks.

Some of you may have seen a photo in USA Today of the surgery where the baby boy's hand reaches out of the uterus and grabs the doctor's finger. Definitely worth seeing.

The Potential Benefits
The MOMS team is hopeful that the study will show that in utero surgery helps people with spina bifida develop improved motor function in their lower limbs, improved bladder control, diminished Chiari malformation, and less need for a shunt. They have seen some evidence of these gains in the pre-study surgeries. The most promising benefit is a possible trebling of the chance that Whitney will not need a shunt.

The Risks
To their credit, the people we have talked to at MOMS have been very honest about the risks associated with the surgery. Specifically, there is about a 5% chance of infant mortality, and a 10% chance that a baby will be born before the 30th week. The average gestation for a baby who has the surger is only 33 weeks. The risks to Susan include the normal complications from major surgery and the increased risk of miscarriage or uterine rupture in future pregnancies.

Our biggest concerns about the surgery are the possibility that we are trading possible future improvements in Whitney's quality of life for the complications related to pre-term delivery, and the risk to future pregnancies caused by the injury to Susan's uterus from the surgeries.

We will be travelling to Philadelphia to the Children's Hospital of Philadelphia (frighteningly abbreviated "CHOP"), in the next few weeks to have a final consultation regarding the surgery. If we opt into the study after the consultation, they will randomize us to determine if we will have the surgery or go home and return to CHOP to deliver at full term.

If after we opt in, the Lord places us in the surgery group, the MOMS team will perform the surgery within a few days. We will have to remain in Philadelphia until the baby is delivered. Fortunately, the people I work for have thrown their total support behind whatever decision Susan and I are led to. If we have the surgery, I will return home while Susan recovers to pick up Fiona and a family member and then return to Philadelphia to stay with Susan until Whitney is born (in December, we hope). We plan on renting an apartment, and hope that friends and relatives will be able to stay with us to take care of Fiona while we are out there.

Please pray that we will have the wisdom to discern whether we should participate in the MOMS trial. You can click on the headline on this post for more information on MOMS.

Pediatric Neurosurgeon Visit

Another of our many appointments that we have had the last few weeks. This doctor would do the surgery on Whitney should we decide to stay here. His name is Dr. Stanly Skarli and a partner with Dr. Foody. They are connected with the DeVos Children's Hospital and come highly recommended. The first surgery she will have will be to cover the exposed part of her spinal cord in the first fews days after birth. We also learned that there is a strong likelihood that Whitney will need a shunt at some point due to her hydrocephalus. We were thankful for his straightforwardness with us but also obviously disappointed. (Shunts drain fluid off the brain) We learned that once a shunt is surgically implanted that you will need one for life. Also, that they need to be switched periodically for adjustments (child grows out of them), infections, malfunctions, and other complications. It looks as though our little one has many surgeries in her future.

Dr. Visit

Our OB doctor has refered us to a perinatologist or what you may call a high risk pregnancy Doctor. His name is Dr. Asad Sheikh (pronounced Shake). He is in the same office as Zuidema, Cook, etc. Little did we know that our first appoinment there would last almost 5 hours! What an emotionally exausting day. First we had a constulation and it was confirming to hear that we had done our research well. Next we had a 1 1/2 ultrasound where they checked every square inch of her to look for other related defects. We were relieved that they did not find any additonal issues. We also learned that Whitney's Spina Bifida is from L3-S1, low back, and they measured her hydrocephalus to record and track its progress. Hydrocephalus is extra spinal fluid traped in the brain. (Matt's post is much more detailed if you are thirsting for more) We left there tired but encouraged that we have a well qualified Doctor to work with.

Our next visit was for amniocentisis. Amniocetisis is when they stick a large needle in your stomoach to collect some amniotic fluid to test. The fluid is filled with the baby's chromosomes whick is quite interesting. No, they do not give you pain medication or anything. I describe it like the shot you get from the dentist that lasts about 4 seconds except this one lasts for at least 5 minuites! This is when we found out that we are having a girl and also that they have found no other abnormalities in her chromosomes. This is just another praise to add to the long list.

September 21, 2007

Spina Bifida

We have had a number of people ask us what spina bifida is, so this post is in response to those questions. The short answer is in the first paragraph. A much more technical answer follows.

Spina bifida is a birth defect that occurs early in a baby's development. As a baby forms in the womb, the vertebrae fold over the spinal cord to create the spine. Spina bifida occurs when the vertebrae do not fold together, leaving a gap in the spine where the spinal cord is exposed. Spina bifida literally means "split spine."

What causes spina bifida?
The medical community still does not fully know what causes spina bifida, but there is research showing that folic acid helps prevent neural tube defects like spina bifida. In our case, Susan was taking prenatal vitamns that include the necessary daily allowance of folic acid since we learned that she was pregnant with Fiona in Septmber 2005. So the lack of folic acid is not the only cause. There is also some genetic component to spina bifida, but to our knowledge, none of our relatives have spina bifida. The mystery of how Whitney developed spina bifida is one of our frustrations.

Types of spina bifida
There are three kinds of spina bifida. Spina bifida occulta occurs when a vertebrae does not fully close, but the spinal cord does not protrude. Spina bifida occulta apparently occurs in 3-5% of the population, many times without people knowing it. Meningocele spina bifida is much more rare, and occurs when the protective coatings of the spine (meninges) come through the opening in the spine. The most severe form of spina bifida is myelomeningocele (mī′ĕ-lō-mĕ-ning′gō-sēl) spina bifida which occurs in a little less than 1 in 1,000 births.

Myelomeningocele spina bifida occurs when a portion of the spinal cord is undeveloped, the overlying vertebrae are not fully formed, and there is no skin covering the open bones or spinal cord. This can occur anywhere along the spine, but is most common in the lower portions of the spine. The spinal cord protrudes from this opening into a neural pouch out of the baby's back. This protrusion is called a lesion. Pediatric neurosurgeons typically operate to close the lesion within 72 hours of birth. Whitney's lesion extends from the third lumbar vertebrae to the first sacral vertebrae--roughly the area of her lower back around the waistline.

Effects of spina bifida
Unfortunately, spina bifida is a complicated disorder that affects numerous body and brain functions. Here are the basics, but we are both relieved and anxious because we don't know the full effects of Whitney's spina bifida on her, and won't know for years.

Effects on lower body
The spinal cord below the lesion typically does not develop properly, so body functions controlled by the nerves at or below this level in the spine are affected. Typically, people with myelomeningocele have progressively more difficulty with bladder control, bowel function, and lower body movement based upon the location and severity of the spinal cord injury. In practical terms, we expect that Whitney will have some degree of paralysis from the waist down.

The information we have seen suggests that Whitney will likely be able to walk with full leg braces. We were initially very encouraged by this, but after attending a recent event with families with children with spina bifida, we learned that Whitney will probably need a wheelchair for her entire life. That said, we praised the Lord after seeing how mobile these kids with spina bifida are. Some of them even play tennis and hockey.

Effects on the brain
In people with spina bifida, the brain is positioned further down into the spinal column than it should be. This is called Arnold Chiari II malformation. This malformation prevents spinal fluid from circulating around the brain. Fluid becomes trapped in the ventricles in the brain, increasing the pressure on the brain. This abnormal collection of fluid is called hydrocephalus or "water on the brain." Around 85% of people with myelomeningocele spina bifida require a shunt to relieve the pressure. The shunt is surgically implanted in the head with a portion that extends into the ventricles inside the brain. The shunt drains spinal fluid into the abdominal cavity. Shunts are likely going to be one of the biggest problems for Whitney.

Effects on learning
Children with spina bifida tend to have slightly lower IQs than the general public and have some learning problems. From what we've gathered, people with spina bifida tend to have significantly better verbal than mathematical skills. Some people also have poor short term memory and poor organization skills.

We have been told that many children with spina bifida are exceptionally extroverted and have very pleasant personalities. We are praying that the Lord will bless Whitney and her family in this way.

Related medical issues
Latex allergies: children with spina bifida are at a high risk for developing allergies to natural rubber. When you consider all the surgeries that these children tend to have, you quickly see how big a problem latex allergies can be. We'll have a nice sign for Whitney's bassinet saying "NO LATEX."

Bone fractures: because people with spina bifida do not bear weight fully on their legs, their leg bones may become thin and easy to break. People with spina bifida also frequently have problems with dislocated and degenerating hips.

Seizures: about 1 in 20 people with spina bifida tend to experience seizures, compared to 1 in 100 for the general population.

Eye problems: people with spina bifida may develop lazy eye. If lazy eye is not treated early, it can become permanent.

The Ultrasound

A few weeks ago, the Lord let us in on a secret--our baby has spina bifida. We missed the normal quad test because we were on vacation, but the day after Labor Day, we were at the doctor's office for an ultrasound. The office had recently gotten a new 3-D machine, and we were excited to come home with the little picture. The ultrasound tech was doing the normal review--those of you who have had children know the drill:

two arms, check
legs, check
heart, check
oh, look there's the face (of course, I don't see it)

But then, as the tech is looking at the head, she says, "I see a problem."

I was devastated. For the next two or three minutes, the technician is looking at the baby's head and I'm wondering what kind of "problem" we have. It felt like an eternity, and I have absolutely no clue what she's talking about when she says, "the ventricles look a little big." I think it was another few minutes before she told us that she thought our baby has spina bifida.

"Spina bifida?" I vaguely remembered that it was some nervous system problem that we learned about in high school biology. I had no idea what it was (that would change in the next six hours). Susan and I sat silently, waiting for more information--Susan was crying, I was desperately trying not to. And I was thinking of all the worst case scenarios--is it lethal to the baby now? Will the baby live very long after birth? Will the baby make it a few months? a few years? Will the child have severe mental impairments? All the while, I was praying that the Lord would give us strength to know how to react and what to say.

The ultrasound technician finally told us that spina bifida is a defect in the spinal cord that occurs when the vertebrae don't fully close around the spinal column. The spinal column protrudes out of the spine into a sac that protrudes from the baby's back. (I'll put together a more technical post with more information later).

Twenty or so minutes later, we sat down with a gynecologist who assured us that spina bifida is not lethal, that people with spina bifida usually live "full and active" lives, and that we needed to make an appointment with the perinatologists. Little did we know that this would be the first of many new doctors we would need.

A few minutes later, Susan and I were walking out of the office. We were stunned and rather numb. When we stepped outside, the sun was shining and the weather was beautiful. I don't know if I'll ever forget the incongruence between our emotions and the beautiful weather.

Susan's Pregnant

We first learned that Susan was pregnant with Whitney Anna on May 17, 2007, the day after Fiona's first birthday. Of course, we didn't she was she, and we didn't know her name then, but the little pregnancy test said she was there. We were excited, and very thankful to God for blessing us with another child.

Trying to be sensible, we waited a few months before telling anyone. We figured that we would send an e-mail to all our friends announcing the news, but we procrastinated. Then events overtook us, and we decided to start a blog. That was almost three weeks ago (procrastination again). So, sorry to everyone who we should have told months ago that we were expecting.