December 28, 2007

Merry Christmas

We hope that you all had a wonderful Christmas celebration with friends and family. We certainly did. We have been very busy running from one weekend to the next but now that is drawing to a close. I look at my planner and 2008 is a blank slate. This is quite the contrast in leaving 2007 behind. I am not worried about not being busy however it will be interesting to see what God has up his sleeve for our lives in the coming months. It is so much easier when we make the plans and fill in each day and quite another when the space is stark white.

I have had 2 appointments since I have last updated you and not much has occurred. They were quick appointments with no ultrasounds. Everything seems to be fine and I have one more quick appointment on the 2nd and then a more detailed one on the 7th to be certain Whitney is ready to come and meet us on the 8th. My c-section is scheduled for the afternoon of the 8th. Please be in prayer for us as we will be unable to hold her and I am sure Matt will be torn as to be with me or Whitney. She will immediately go to the NICU and her surgery for her back closure is scheduled for Wednesday morning the 9th. They anticipate that she will be in the hospital for 2 weeks and we will keep you posted as to when or if her shunt surgery will be to relieve the pressure on her brain.

Have a blessed New Years!

December 10, 2007


Every once in a while, we get a card in the mail that makes us stop and reassess what's happened to us. We got one late last week.

Someone who knows someone who knows Susan sent us a card to encourage us. In it, she related that she had been praying for us ever since she learned about Whitney in October. She then related to us how God's grace is always sufficient for us by telling us how God had carried her through unspeakable grief: she had lost three children to a very rare metabolic disorder. During one of the pregnancies, her doctors ruled out autism, and she was disappointed. She knew that she could care for a child with autism, she could pour her love into providing for that child. But she couldn't pour a lifetime of love into the children she lost. She reminded us that, Lord willing, we would have that opportunity with Whitney. And with that, God reminded me (again) that Whitney with her spina bifida is a blessing that we have only by His grace.

December 4, 2007


We are now 5 weeks away and after yesterday I am feeling a bit more stressed about Whitney's upcoming arrival. My doctor appointment went well. She is no longer in the breach position which I suspected as she kept me wake the other night. This allowed us to get a great look at her spine which we have been unable to do through ultrasound. I have to admit that it was hard for me to see the reality of her spina bifida lesion. However, it does remind me how grateful I am that I am able to process this now before her arrival. She is now 4 lbs and 15 oz which places her in the 56th percentile. She has grown quite a bit in the last few weeks. Her hydrocephalus is now measuring 27 and 17. The ventricles are usually symmetrical so we are not sure what this means as of yet. The positive thing is that her head circumference is measuring normal. We were unable to see her feet so I pray that they are still not clubbed.

Matt met me for a tour of the NICU after my appointment and we were amazed at how large it was. There are currently 82 babies. We saw the first room and then the second and I thought, "wow they have 2 rooms". I think we saw around 16 different rooms with babies in them. Many of the babies are so tiny and have so many difficulties that it made me very grateful that Whitney will enter this world full term. I was encouraged to see 3 people I knew that I did not expect to see. It is always uplifting to see a familiar face. We did find out that Whitney's stay will be closer to 2 weeks not 1. We are a little disappointed as it will be very hard to leave her there for that long and more difficult as I am going to nurse her and will not be able to drive for a few weeks after surgery. The details will all iron out, right?

This week we also have a tour of the rehabilitation hospital in town and Fiona's toddler bed is scheduled to arrive. Next week we will begin our search of a school in the area that integrates special needs children. My next doctor appointment is on the 17th and it looks like it may be my last one before January 7th and 8th. The time is flying by.

November 23, 2007

January 8, 2008

We now know that Whitney's birthday will be on Tuesday, January 8, 2008. That Monday we will have a maturity amniocentesis to ensure that her lungs have fully developed and if so we will keep the date otherwise we will move it to a few days later. I am not sure how I feel about being awake while they perform the c-section...It just doesn't seem right.

Our next appointment, December 3, will give us more details about Whitney's care after birth. We will have another ultrasound, tour of the NICU, and have a consultation with the neonatalogist.

Currently we are trying to prepare for a few practical changes such as moving Fiona to a toddler bed and purchasing a few new items. The next 6 1/2 weeks are going to fly by with all of our Christmas festivities. She will be here before we know it.

November 6, 2007

Doctors Appointment

Yesterday I had my first appointment since being home from Philadelphia. I had 2 ultrasounds since after the first one the power went out and all of the information was lost so we started again. They reviewed the ultrasound and MRI reports from CHOP and hopefully they will be able to utilize the information.

Whitney has a head of hair already. I am very excited about this since all of the Vandersluis children are born bald. I can't wait to see what she looks like. She is currently 2 lbs and 13 oz which is in the 47th percentile for 29 weeks. We were unable to see her back again since she is still in the breach postion and looking very cozy down there. The fluid in her brain ventricles have increased a little to 17mm and 21mm. This is no suprise however we continue to pray that these numbers do not increase. The great news is that her feet are not yet clubbed. We are thankful for this and continue to await her birth watching God work in our little girls body.

My next 2 appointments will be every 2 weeks, Nov 19th and Dec 3rd. We are scheduling a c-section which is looking like it will be during the first full week of January. I can't believe that Whitney's arrival is only 9 weeks away.

Florida Keys

I know many of you are wondering how our trip was and it was wonderful. The flights were all as scheduled and Fiona did great. She slept on the way down and on the way home we sat next to a very nice man who held and played with Fiona for the last hour of our flight. Fiona was having the time of her life playing with the new 'toys' he had with him such as a golf ball and breath freshener. It is amazing what can entertain children. I buy these fancy new toys for the trip and she is more interested in playing with our plane ticket stub.

The weather was better than we expected. There was a 50% chance of rain each day with wind from NOEL coming in, however, it was sunny every day and rained at night. We were very blessed and Fiona and I spent many hours by the pool. We tried to go to the beach but it was pretty dirty and I thought that the beach volleyball court and pool were a better fit for us. We also went to the aquarium and a butterfly museum during the week. The butterflies were amazing and it was fun to watch Fiona point at all of them and attempt to grab a few.

Overall it was a wonderful gift. Thank you for praying for our safe return.

October 26, 2007

Spontanious Gift

Matt came home the other day with an opportunity to go to the Florida Keys for a week. Someone else from Matt's work was supposed to go and last minute was not able to. Fortunately, Matt's schedule is not packed since he cleared it for the possibility of being in PA for awhile. Matt asked if I could come and so Fiona and I are going along for the ride. I am still shocked over this opportunity because it is nothing we sought out. It just fell into our laps and here we go. This is a blessing and perfect timing before the holidays and Whitney's arrival. It is amazing to me all that God has and is providing for us. I am overwhelmed with the knowledge that He knows my every need.

October 19, 2007

In Retrospect

First, we apologize for not posting in the last week. Actually, I apologize, Susan has been encouraging me to post since we got back from Philadelphia.

In the past week and a half, I've been asked quite frequently how we're doing, and then specifically how Susan is doing. No one seems to believe me when I say that we're doing fine. It was disappointing not to be able to participate in the MOMS trial, but it does no good for us to dwell on that.

I never did explain what happened and how we reached the decision to enroll in the trial before we found out that we were not eligible. On Friday, we left CHOP impressed with the doctors and hopeful for the benefits that might accompany the surgery. The obstetrician we met with suggested that there was a possibility, based on CHOP's experience with the prenatal surgeries at CHOP before the study that Whitney could show a two level improvement. In other words, the effects of her spina bifida on her lower limbs would be like someone with a spinal lesion at the fifth lumbar vertebrae instead of the third (which is where Whitney's lesion is). Practically speaking that's the difference between walking until puberty with full leg braces and in a wheelchair thereafter to walking for her entire life with ankle braces. That said, we were very concerned about the possibility that if we had the surgery, Whitney could be born extremely premature. CHOP had carefully explained all the risks associated with prematurity, and they are exceedingly frightening. As an aside, I now have an immense sympathy for parents whose babies are born before the 30th week.

We spent much of the day Saturday intentionally not talking about the surgery because we both needed time to process the information we received. For those of you who don't know us well, Susan and I process information differently. I tend to be more logical and reach a decision faster (although I am more prone to change my mind) while Susan tends to ponder things over a longer peroid and then reach a firm decision. Susan and I agonized over whether we could handle opting into the study and then losing Whitney or causing her even more severe problems. More generally, we wrestled with whether it was God's will for us and Whitney to participate in the study.

To fathom God's will in a situation like this was not easy--we were considering an elective surgical procedure that could kill Whitney to improve her life. It's a little easier to accept the risk of a fatal surgical outcome, I think, when the surgery is life-saving or life-lenthening and the alternative is death. Susan and I prayed and sought the advice from friends who are ministers and doctors. They told us that ultimately, we were doing what the Lord requires of us, that we seek His guidance in prayer, search the Scriptures for normative principles, and use the intellect He has given us to gather all the possible relevant information. We concluded that we were considering the surgery for the right reason, improving Whitney's quality of life; that we were not taking unnecessary or unconsidered risks; and that we were not acting contrary to God's Word or our own consciences. Ultimately, there was no "right" answer--we could have the surgery or not have the surgery without our consciences condemning us.

The hardest issue to consider was "what if Whitney dies?" Spina bifida is not typically lethal during infancy (or childhood for that matter). Would Whitney's death be a sign of God's punishment on us for making the wrong decision? How could we live with ourselves/maintain a belief in a just God if Whitney died? We reasoned that God is a just God--He does not punish us for doing things that He has not warned us are wrong. Nothing in Scripture or our consciences suggested that the surgery was morally wrong. If Whitney died as a result of the surgery, it would not be God's punishment. God also promises us that He will not give us more than we can bear, a blessing we had been experiencing ever since learning of Whitney's diagnosis and earlier when Susan's mom passed away. We decided that we could be confident that no matter what happened, God would provide for us and use whatever happened for the good of our salvation.

So then, we were left with making a decision. Susan and I concluded that we were inclined to opt into the MOMS trial. We decided to sleep on the decision and if we still felt comfortable with it in the morning, we would opt in. We prayed on Sunday night that if the Lord did not want us to proceed with MOMS, that he would not give us peace with the decision. We woke up on Monday with continued concerns but without any uneasiness about the surgery.

Of course, little did we know that 12 hours later, we would find out that the Lord had already determined at least as of Thursday that we would not participate in the trial. We were admittedly a little upset that the Lord had allowed us to go through the angst of reaching a decision about the study. But looking back, Susan and I are still thankful that God clearly revealed His will for us. We don't understand why He allowed us to go to Philadephia and agonize over whether to participate in MOMS, but we are content that He is the sovereign God, we're not.

In the end, going to Philadelphia has been a blessing. The doctors at CHOP explained Whitney's condition in far more specific and helpful ways than anyone else we have met with. They were willing to give prognoses and make predictions that allow us to appropriately set our expectations. For example, the pediatric neurosurgeon at CHOP told us that it is virtually certain that Whitney will need a shunt shortly after birth because her ventricles are already significantly enlarged. We got to experience the hospitality of the Ronald McDonald House. And we got to wrestle with a very difficult decision and learned how to apply a biblical decision-making process.

I could go on, but suffice it to say that Susan and I are happy to be home, and we're at peace with the result of our trip to Philadelphia and with Whitney's spina bifida. Sorry for the stream-of-consciousness post. I'll try to be more succinct next time.

October 11, 2007

Home Sweet Home

We arrived home on Tuesday night. Our flights went well and our seats were upgraded on each one. The more leg room the better. Fiona (and Maria) picked us up from the airport and we were very excited to see her. Once we gave her a chance to be put down she took a few steps for us! What wonderful timing. We are so glad that we did not miss out on that moment. The unpacking is still in progress. Thankfully we were able to do our laundry before we left. It takes awhile to unpack 3 months worth of stuff, hopefully today is the last day.

Amazingly Matt and I feel peaceful about were we are. God has already provided so much for us and we have no doubt that He will continue to provide. Thankfully we have 3 months to prepare for Whitney's arrival. Her due date is January 21, however we will need to have a c section two weeks before that. Our next doctor's appointment is at the end of this month and by that time they should receive all of the results from the testing we had done in PA. CHOP is gracious enough to share my file with our doctors here in town. This should allow them to keep track of Whitney's bleed as well.

October 8, 2007

Prayer Answered

What was the prayer? We have been praying that God would make this decision unmistakably clear to us both as to what we are to do. He has answered us without question. Although we thought we had a decision to make and have been deliberating and stressing over this whole process in the end, there was no decision to be made. We came to a conclusion over the weekend to enter the study after many conversations, tears, and prayer. God brought us through this decision-making process bringing us closer to Him and to each other and we praise Him for that. Looking back on the day we have mixed emotions.

We are thankful that God took us on this journey to meet with these wonderful doctors and that they discovered this bleed through the use of the MRI, which we would not have had otherwise. We are also thankful that he has used this process to deepen our faith and has given us many opportunities to share with others. We are disappointed in the result because we have poured so much time and effort into the details of this trip. We have also put so much of our energy into this decision and then to have it disappear is actually hard to put into words... but how can we argue when God has answered our prayer so clearly?

I know that God is the healer not the Doctors here. When Whitney goes beyond what they have predicted her to do, there is only one explaination--God's healing hand not the in utero proceedure. Thank you for praying us through this difficult week. We continue to eargerly anticipate what God has in store for our dear daughter.

Going Home

A quick note:

CHOP told us today that we are disqualified from the study because of the small choriod plexus bleed in Whitney's brain. Praise God for a clear answer to our prayers. More to follow . . .

On hold, again

We had to get up at oh-dark-thirty this morning, as my brother-in-law would say, to get to CHOP to meet with the pediatric neurosurgeon this morning. We did not receive a lot of new information, except that it is a near certainty that Whitney will need a shunt if her lesion is repaired after birth.

On Friday, we learned that Whitney suffered a small amount of bleeding in her choriod plexis at some point earlier in the pregnancy. The choriod plexis is a gland present on both sides of the brain in the ventricles that produces cerebrospinal fluid. The bleeding does not extend into the brain itself nor did the blood spread into the ventricles (where the cerebrospinal fluid circulates to bathe the brain). On Friday, the obstetrician told us that he did not believe that this choriod plexis hemorrhage would exclude us from the study, but that the pediatric neurosurgeon (who was out) would need to make the call.

Turns out, the pediatric neurosurgeon cannot make the call after all. The National Institutes of Health (NIH) does. NIH funds and oversees MOMS. CHOP is concerned that the bleeding may exclude us from the study. The doctors are all of the opinion that the choriod plexis hemorrhage is not significant. But the protocols for MOMS exclude babies with any bleeding in the brain. The doctors rationalize that this was intended to exclude hemorrhages that occur in the brain itself and the ventricles, not the choriod plexis. The doctors have contacted the National Institutes of Health to recommend that we be permitted to participate in the study if we choose. Now we have to wait for them to respond.

Apparently, NIH has received the data and CHOP hopes to have an answer by the end of the day. Cynically, I'm well aware that this is Columbus Day, one of the umpteen holidays given to federal employees in lieu of decent pay. Hopefully, the right people are not taking the day off so that we'll really get an answer today. In any event, I highly doubt that we would have surgery tomorrow if we opt in. Another day without Fiona . . .

Friendly Presbyterians

We had a great Sunday worshipping with Immanuel OPC in Bellmawr, New Jersey. Strong, straightforward preaching at two services with communion (celebrated once a month--wish we did that at home) to boot.

After the morning service, we were invited to the church's potluck after the morning service. We even had to decline an invitation to join a family for dinner after the morning service because of the potluck. While we were getting ready to go to the evening service, a different family from the church called us to invite us to a bonfire after evening worship. After discussing our situation, the other families encouraged and prayed for us, then offered to help in any way that they can. It is an awesome experience to find brothers and sisters in Christ who immediately treated us as brothers and sisters even though they had never met us before. We look forward to worshipping with Immanuel in the future.

October 6, 2007


We have been blessed throughout our marriage to know a wonderful photographer. When she found out that we were leaving last week for Philly, she squeezed us into her schedule for pictures of Fiona. She shared a few of them with us today, and they brightened our spirits tonight as we deliberate what to do. We share a few of them with you here, with her permission.

Here's Ronnie

October 5, 2007

La Famiglia

Today is Susan's birthday--she finally matured to join me in the post-twenties. After getting more difficult information about Whitney than I care to recount, I took Susan to a nice Italian restaurant. The food was excellent, and plentiful. But better than that, the atmosphere was sufficiently private to allow Susan and I our first opportunity to begin discussing where we going--at this point, our conclusion is "we're not sure."

We would ask you, our friends and relatives, "the family" to continue to pray that Susan and I will be able to readily discern the Lord's will for us by Monday so that we can return to CHOP with confidence.

In other news, our warmest thanks to Melody for sending a care package complete with a birthday banner, candles, and matches. It brightened our day after our last consultation.

By the way, we highly recommend the restaurant if you're ever in Philadelphia.

Day 2

What a day. It was filled with information, meetings, and emotions. I feel like I am still pulling myself together and it is 10:30 PM. Yesterday we had all of our tests and today we spoke with all of the surgeons about the results of those tests. We were able to meet with them one on one and pepper them with questions for hours. What a blessing it is to be able to meet with the most knowledgeable doctors for spina bifida in the nation. There was a lot of information that was confirmed for us and more details and specifics were given. This is such a difficult decision and I wish there was a 'fix' for everything but realistically there is not. The battle is long and up hill no matter which avenue we go down. It is comforting to know that God already knows where we are going today and in 5 years. Please continue to pray for us this weekend as we sit down together and weigh out all the information before us.

Tonight we were thankfully able to end the day on a good note. We went out to a restaurant and spoiled ourselves with the most delightful food. It was a wonderful dinner with great company. ;)

October 4, 2007

CHOP--Day 1

We're at CHOP now. Susan's talking to a genetic counselor. Our first stop of the day went long--Whitney started dancing when they put Susan in the MRI machine. I think she's got her mom's spirit. As soon as we are done with the social worker, we'll go on for an echocardiogram.

Our friends Steve and Carrie Wolters are coming to Philly to go to dinner with us tonight. We just saw them in August--check out the cute picture of Fiona from their blog.

October 3, 2007

Ronald McDonald House

We made it! We started the day in a rush to get Fiona to our Pastor's home and then headed to the airport. Our flights were uneventful and we arrived here on time. We decided to rent a car and after only 1 wrong turn we found the Ronald House. Thankfully it is right next door to the Police Department and it is also just a few miles from Rutgers University. Matt and I are still recovering from our shock after the tour of this house. You walk in and there is this huge community kitchen with probably 6 refrigerators lined up. 2 are for everyone and then there are the ones labeled by room that you can put your own food in. There are also 4 cupboards filled with food including Pop Tarts that I have been craving. (: There is a play room, living room and dining room on the main floor. Then we went up to our room that has 3 twin beds and 1 double. It is a very large room with a separate bathroom. We also have a lounge and laundry room on our floor with detergent provided! Everything is very clean and amazingly well kept as they are celebrating 24 years tomorrow. We are very blessed to be able to be here in such a wonderful and friendly home.

Our first appointment at CHOP tomorrow is at 8 AM. We will keep you all posted. Thank you for praying us through our travel today. Oh, and Fiona is doing great. (: She is settling right on in and to my understanding is quite entertained by the 2 Miller children. I am so thankful that she is being well taken care of and adjusting well.

October 2, 2007

Whitney's Stats

Whitney had another ultrasound yesterday. She is now 1 lbs and 9 oz which puts her at 55% for being 24 weeks old. In other words her growth is very normal! We found out it is very common for Spina bifida babies to have club feet but her feet are looking straight so far. We also know that she has no additional chromosomal issues so we are thankful for this overall good report. On the other hand her hydrocephalus is increasing. They first measured the fluid in her brain at 14 and now at 17. This was alarming to me but my Doctor was not surprised and said that an increase is exspected. (I am still concerned.)

I should get back to the packing... I love to pack.

Our new (temporary) address

Our liason at CHOP has been gracious enough to accept our mail for us until we return home or we move into a more permanant place after surgery:

Matt & Susan Nelson
c/o Jamie Koh
The Children's Hospital of Philadelphia
34th & Civic Center Blvd.
Philadelphia, PA 19104

October 1, 2007

Do we rent a car?

Now we get to sweat the important stuff like, should we dispense with the cabs and rent a car? They haven't figured out if we are going to stay at the Ronald McDonald's house in Camden or in the Sheraton Inn a few blocks from CHOP. Obviously, we won't need to drive to CHOP if we're at the Sheraton, and it will be easier to go site-seeing on Saturday. On the other hand, we will be more than 10 miles from the church we hope to worship with on Sunday.

With a little help from my uncle and his minister, we've found a church to worship with on Sunday. Immanuel Orthodox Presbyterian in Bellmawr, New Jersey. It looks like it's a little southeast of Philly on the better side of the Delaware River. I'm trying to find out if there is bus service from Camden and/or the University of Pennsylvannia to Bellmawr. If not, we either have to hail a cab or rent a car.

Anyone know how good/safe public transportation is in Philly? Is it safe to take public transportation from Camden? Is it safe to park in Camden?

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.