Joliet couple expecting twins conjoined at the spine

Caleb and Heather King of Joliet, with daughter Hayden, recently learned she is carrying twins conjoined at the spine. Friends are helping with medical expenses with two benefits. | Submitted photo

Updated: July 14, 2012 6:08AM

JOLIET — Fifteen weeks pregnant, a nervous Heather King, 40, lay nervously hopeful on the table as the ultrasound technician moved the wand over her abdomen.

Heather had delayed this ultrasound because, just a few months ago, the ultrasound that should have brought happy news had been the death knell of her third pregnancy: That baby had no heartbeat.

Several years ago, Heather’s first pregnancy ended in miscarriage, but a later pregnancy had been successful with the birth of Hayden, now 2. As members of the Christian rock band Daniel’s Window, the Kings had toured the country sharing faith in Jesus with others. Now, they are heavily drawing on that faith.

When Cathy Craig, Heather’s Silver Cross Hospital certified nurse midwife, shared the results of this latest ultrasound, Heather was relieved to hear the test had detected one and then two heartbeats, until Craig broke the rest of the news: the babies are conjoined at the spine. Craig was as devastated as the Kings were.

“It’s very difficult to see someone you like going through this turmoil. You feel so helpless,” Craig said. “I can do the regular obstetric care — tummy checks, blood pressures and listening for heartbeats — but they need so much more in terms of support.”

Because they are both self-employed (they teach at their private music and art studio) Heather had purchased private health insurance. The policy does not, however, include maternity coverage.

Friends have planned two fundraisers to assist with the medical costs associated with this pregnancy.

“I’m a bit overwhelmed by the outpouring of love and support we’re seeing from friends and family,” Caleb King said. “I think we all hope that when something horrible happens in your life, people will be there to help you through it. We have such loving and generous friends. I feel so unworthy of their love, but am also immensely grateful for it.

Craig sent the Kings to Rush University Medical Center in Chicago for a more detailed ultrasound. It not only confirmed the conjoining at the spine, it also showed how misshapen those spines are.

Although the twins’ chances of surviving the pregnancy are nearly zero, Heather and Caleb decided to carry the pregnancy for as long as possible and began a blog (www.thekingtwins.tumblr.com) to keep family and friends updated and informed about their journey.

The Kings also are accepting donations through the blog and are hoping to receive additional funds through www.hopemob.org, if their story receives enough votes.

“After realizing that the babies were facing an impossible situation, my reaction was one of relief mixed with tremendous guilt,” Heather wrote on May 20. “Relief that they wouldn’t have to go through life with enormous physical difficulties and emotional challenges. Relief that I wouldn’t have to learn how to deal with their physical needs, figure out how to pay for all the extra costs associated with those needs, deal with the stares they would get in public, and give up my entire life to care for them.

“Guilt that I, as their mother, would even have these thoughts. Guilt that I wasn’t ready for this. Guilt that I would rather see them in heaven than here on earth.”

Caleb is doing plenty of his own worrying.

“My first reaction as a man was, ‘How do I provide for them? My art degree is useless. I can’t even teach at a university because I don’t have my masters yet,” Caleb said. “My home is too small for their needs and so is my vehicle. I don’t have the equipment they’ll need.”

As the Kings researched their options, they learned the only experimental spinal surgery that had been performed on infants during pregnancy was limited to cases of spina bifida.

For now, Heather is continuing her prenatal care with Craig, but if she develops complications she will return to Rush.

Despite all the advances in technology, the Kings literally have no options except to pray and wait.

“I’m taking this one day at a time,” Heather said. “Sometimes one minute at a time.”

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